CALENDAR OF EVENTS

March is MS Awareness Month - Check out these great programs being offered.

March 13th - 14th , Saturday to Sunday, “All about ME Adult weekend”! If you haven’t signed up yet, do so TODAY! This is an awesome weekend you won’t want to miss. Check out all the great workshops, fun and pampering on the enclosed flyer!!

March 17, Happy St. Patrick’s Day – Wishing the Luck of the Irish to all of you!

March 18, Thursday - Betaseron Lunch and Learn 11:30 -12:30 pm at the TSMSA office with Phil Nixon, Betaseron Representative and Sherry Adock, Betaseron Nurse. Do you have questions about Betaseron or their new patient assistance program? Join us for lunch & details.

March 18, Thursday - Newsletter Stuffing, 12:30pm at the TSMSA office! A great way to volunteer at the TSMSA office and meet new friends.

March 22, Monday, Biogen Idec, Mark Melcher, Tysabri Info., 2:00pm at TSMSA office. If you have questions regarding Tysabri join us for this informal talk and refreshments!

March 24, Wednesday, Teva Neuroscience Dinner Program with Dr. Cox at The Springs The Springs, 2200 E. Parrish Ave., Owensboro, KY, 5:30pm. Call 1-800-887-8100 to register!

March 25, Thursday, “Making over You” by Mary Kay consultant Judy Boehman! TSMSA office from 10am to noon! Judy always makes us feel special at the “ME” weekend!

March 26, Friday, Biogen Idec Dinner Program with Dr. Clare Hashemi at Jasper Inn. Join us at Jasper Inn, 951 Wernsing Rd, Jasper, IN at 5:30pm. Call 1-866-955-9999 to register!

March 31, Wednesday, Medtronic Lunch & Learn, Noon to 1:30pm at the TSMSA office, with representative Audrey Lipkey. Come learn more about the Baclofen Pump.

April 22, Thursday, Dr. Randall Schapiro, Educational Dinner Program sponsored by EMD Serono and Pfizer at the Marriott Hotel at 6:00pm. Join us for this outstanding speaker! Dr. Schaprio is the author of several books on “Managing the Symptoms of MS”.

June 3, 4, & 5 Hirsch Rummage Sale at Washington Square Mall – Start spring cleaning! Call Laurie 476-5567 or Sally 401-7933 for information on dropping off items for the sale!

July 10 & 11, Saturday and Sunday, TSMSA Family weekend at YMCA Camp Carson! Watch your newsletter for more information and a registration form and details.

FOR SALE

Quickie Power Chair - It is bright yellow, has a wide seat, and a power tilt seat. Not new, but still has a lot of life. Good batteries, with off board charger. You will need your own seat pad. $500 VERY NEGOTIABLE! Karl 1-270.339.9817 or karlt1954@bellsouth.net

Walker with Seat, like new. Only $100.00! Call Tresa 402-0053

PROGRAMS AND ASSISTANCE

Talking Books a National Free Program…The Talking Books Service of the Evansville Vanderburgh Public Library is part of a nationwide network of cooperating libraries headed by the National Library Service, a division of the Library of Congress. It was established to provide library services to individuals that are unable to use standard print materials because of a visual or physical disability.

Books and Magazines…This free service provides its users with recorded books and magazines. By enrolling in the Talking Books Service you can enjoy bestsellers, romances, mysteries, westerns, science fiction…books on current events, history, religion, biographies…as well as poetry, humor and children’s books! You may also choose from more than seventy popular magazines, such as Good Housekeeping, People Weekly, Reader’s Digest, and Sports Illustrated.

Special Equipment…The special easy to use playback equipment required to play Talking Books is also provided at no charge.

Home Delivery…Reading materials and equipment are sent to borrowers and returned to the library by postage free mail. Or if you prefer, you can download your selections from the comfort of your home.

Service Area…From our library we serve residents in eleven Southern Indiana counties. They include: Daviess, Dubois, Gibson, Knox, Martin, Perry, Pike, Posey, Spencer, Vanderburgh and Warrick. Residents of Indiana outside this area can obtain information from the Indiana State Library, Talking Book & Braille Library at the following toll free #: 1.800.622.4970. Kentucky & Illinois residents may contact the following numbers: Kentucky toll free: 1.800.372.2968 and Illinois toll free: 800.665.5576.

To Apply…To receive an application or for more information call the Talking Books Service at 812.428.8235 or Toll free 1.866.645.2536 or Email: tbs@evpl.org. Monday-Friday 8AM-5PM.

Free Tax Service offered at several locations throughout the Tri-State area! AARP’s Tax Aid Program is offered free at EVPL libraries, www.evpl.org or call 428-8200. Check with tri-state area libraries, colleges and churches, many are offering free tax services.

Free Yoga DVD from Mymsyoga.com

MSF and MSAA Free Coolant Products are now accepting applications for free cooling products! I know its cold outside but before you know it warmer weather will be here! So be prepared and apply for free coolant products now before it’s too hot! For MSF call 1-888-673-6287 or www. msfocus.org and for MSAA call 1-800-532-7667 or www. msassociation.org.

Two more drugs are in the pipeline to treat Multiple Sclerosis. The results of three large randomized trials of two new oral medications for Relapsing Remitting MS were published online in the New England Journal of Medicine. All three studies were done by the drug’s manufacturers: Novartis for Fingolamod and Merck-Serono for Cladribine. Both are currently pursuing US Food and Drug Administration approval for their medications.

Two of the studies were done on Fingolamod. Both of the studies were Phase III studies. One (called the FREEDOMS trial) had and enrollment of over 1,000 people. The participants received a daily dose of 0.5mg or 1.25 mg of Fingolamod or a placebo. Relapse rates were 54% less for the lower dose and 60% less for the higher dose. The probability of disease progression was 17.7% with the 0.5mg dose and 16.6% with the 1.25mg dose and with the placebo it was 24.1%.

The Second study of fingolamod (called the TRANSFORMS trial) enrolled 1,153 people with Relapsing remitting MS. These patients were randomly assigned to receive 0.5mg or 1.25mg of Fingolamod daily OR a weekly dose of 30 mcg. of interferon beta 1A (Avonex) for one year. Similar to the first study patients on fingolamod were found to have lower annualized relapse rates. This study found no significant differences in disease progression between the two treatments.

Both studies found that the lower dose of the drug was better tolerated. Increased serious adverse effects were noted in the higher dose in some cases even lethal. Herpes Zoster infections were seen and resulted in 2 deaths in the TRANSFORMS trial. (Herpes Zoster is the virus that causes shingles)

A third study, also in Phase III looked at the oral medication cladribine and compared it to placebo. This study (CLARITY STUDY) had an enrollment of 1,300 people with Relapsing Remitting MS. They were randomly assigned to receive either 3.5mg or 5.25mg per Kg of body weight of cladribine or a placebo. During the second year all were given the lower dose. Of the three groups, patients on cladribine showed significantly lower annualized rates of relapse (0.14% and 0.15%) than those on placebo (.33%) Adverse effects seen were herpes zoster infections and a potentially increased risk of Lymphcytopenia. (Low levels of lymphocytes in the blood that are needed for immune functioning) Lymphcytopenia and Leukopenia were also seen with fingolamod though at lower rates than with cladribine. Cladribine is already on the market under the trade name Leustatin to treat hematologic cancers. Dr. William B. Carroll MB, MD who writes editorial accompanying articles in the New England Journal of medicine said that Neurologists will be under a lot of pressure from the needle phobic patient to move to an oral drug. He stated that “the adverse affect profiles appear to be more serious than currently available drugs and are simply not completely known yet.”

Here is my opinion:
I suppose the good news is that there are two oral agents in the pipeline that are likely to be approved by the FDA. The bad news is that the risks are higher. With currently available agents the main complaints are injection site reactions and flu like signs and symptoms. Compared with the risks of the two new oral medications those side effects are very minimal. Patients on the new medicines will need close monitoring for herpes infections, malignancies and bradycardia. (a transient slow heart rate, was seen with Fingolamod). The price you have to pay for greater efficacy is greater risk. This risk IS appropriate for some MS patients, though.

Update on Fampridine SR or Ampyra
Have you heard? Famipridine SR has been approved by the FDA for sale. It is to be used for people with all types of MS. Ampyra (pronounced ampeerah) is the first drug specifically approved for a symptom of MS. Ampyra is not a disease modifying therapy. It does not treat or change the underlying course of the disease. It has been shown to increase walking speed by 25% compared with a placebo. Results were published in the. Lancet 2009 373; 732-738. Ampyra will be marketed by Acorda therapeutics and should be available by March 2010. The company press release says it will cost $1,056 per 30 day supply. The patient cost will depend on the price negotiated by your insurer. No word yet on whether patient assistance plans will be available.

Sources:
New England Journal of Medicine
The Lancet
CMSC Healthday

March is Disability Awareness month in Indiana and also National Multiple Sclerosis Education and Awareness Month. There are several definitions of the word disability. Disability can be defined as; “lack of adequate power, strength, or physical or mental ability” and “a physical or mental handicap, especially one that prevents a person from living a full, normal life or from holding a gainful job”. Based on these two definitions, anyone can be considered to have a disability. Some days, people just don’t seem to have the strength or adequate power to do activities of daily living. Just because a person is diagnosed with Multiple Sclerosis, does not mean that they have a disability. Many people who are diagnosed are able to lead a “normal” life. On the other hand, some people who have been diagnosed with Multiple Sclerosis are not as fortunate and do not have the physical or mental ability to live a “normal” life. Even if you do not consider yourself to have a disability, it is important to support Disability Awareness month in Indiana and National Multiple Sclerosis Education and Awareness Month. By supporting these two events, you are able to make people aware of disability and Multiple Sclerosis, as well as be a support system for fellow people and their families who are fighting Multiple Sclerosis.

Anyone who has ever tried to file for disability or Supplemental Security Income (SSI) knows that it can be a stressful and tedious task. Below is some basic information for those who believe that they are at a point to file for disability or SSI.

The Social Security Administration offers two disability programs. Social Security Disability Insurance (SSD, SSI, or Disability) is the first of the two programs. Based upon your work history and the Social Security taxes you’ve paid. Monthly benefits are determined by the number of years you’ve work and your wages. Supplemental Security Income (SSI) is the second program that the Social Security Administration offers. A needs- based program for disabled adult and children, or seniors 65 and older, who have limited income and few resources.

To receive Social Security disability or SSI, you must have a mental or physical impairment which is expected to prevent you from doing substantial work for at least a year, or which will result in death. There is no temporary or partial Social Security disability, as with workers compensation programs, Also, Social Security looks not only at your ability to perform your most recent job , but also your age, education, and other positions you have held or for which you might be qualified.

The disability application process can be broke down into 5 different steps.

Step 1: Contact the Social Security Administration. When you go to your nearest Social Security office, you will need to provide names and contact information for all physicians and hospitals that have treated you, a list of all of you medications and a description of how your disability affects your daily life.

Step 2: Your case will be sent to the Disability Determination Bureau for evaluation. A disability examiner is assigned to your case while medical and vocational experts review your medical records, work background and disability history. The Disability Determination Bureau will request copies of your medical records from physicians, hospitals etc. Please let you doctor know you are applying. You maybe asked to visit a physician or psychologist for a test or exam at Social Security’s expense.

Step 3: Your claims will be processed as quickly at possible. The majority of cases are decided within 120 days, but processing time may be longer depending on the circumstances of your case. To avoid delays notify you Social Security representative if: you change your address or telephone number, your condition changes, you require any new tests, treatments, medications, etc., you return to work or if you are unable to keep a appointment Social Security has scheduled for you.

Step 4: A final decision is mailed to you. You will be notified by mail when your claim in approved of denied. If your claim is approved, a Social Security representative will call you to update your records. You should receive a letter notifying you about your monthly benefits, back pay and when your checks will start. If your claim is denied, your letter will explain to you the reason(s) that you did not meet the requirements for Social Security or SSI disability benefits. The letter will contain appeal options and instructions.

Step 5: Do you need a lawyer during the appeals process? No. You are free, however, to obtain representation at any time.

Here are a few websites that may be able to help you during your application and appeals process:
www.usdisabilitylaw.com
www.socialsecurity.gov
www.msworld.org (go to the Q&A board)

We are excited to announce that we will be putting together a cookbook to help raise funds for TSMSA. Send us your favorite recipes and we’ll include them in the cookbook with your name. Please list if your recipe is a dessert, appetizer, main dish or vegetable. You can e-mail, officemanager@tristate.ms, your recipe to or fax to 812-423-5650 or mail it to TSMSA, 971 C. Kenmore Drive, Evansville, IN, 47714. You are welcome to send more than one! We’re looking forward to sharing all those wonderful family recipes and some quick and easy meals for all to enjoy. We know there are some great cooks out there, so please share those recipes!

Thank You Barbara Dame and Whitney Pry for being the first ones to send in those recipes!

Everyone has someone that holds a special place in their heart. They are that person that has been there to comfort you, hold your hand, challenge you, laughed with you, showed you strength and so much more in your life time. You can recognize them by making a donation to the Tri-State MS Association. Starting in August and each month after, you can acknowledge those individuals in the newsletters, with your donation to the Tri-State MS Association. There is no set amount on the donation. Whatever amount you are able to donate is a gift and appreciated. This is a wonderful way to acknowledge those individuals in our lives that have in the past and presently are making a difference to us. Please include a note of who the donation is In Memory of or In Honor of.

In Memory of Larry Cecil
Darrell Cecil
Mr. & Mrs. James Cecil
Mr. & Mrs. Albert Staples
Mr. & Mrs. Mike Filbin

In Memory of Sherry Ruxer
Aileen Roberts

In Memory of Pat Holder
Mr. & Mrs. Mike Rayburn

In Memory of Lewis Reed Lamb
Mr. & Mrs. Charlie Omer
Debbie Hebbeler

In Honor of Tri-State MS Association
Dr. Rick Yeager
Mr. & Mrs. Jack Snurpus
Mr. & Mrs. Steve Siddons
Mr. & Mrs. George Duncan
Southern Belles Unit 441

Purchase or Order Valentine’s Flowers and Gifts from Zeidler’s and you will make
that someone very happy and be helping the Tri-State MS Association!

Zeidler’s is now offering a Helping Hands Program to benefit not-for-profit agencies. Whether you place your order at the store, by phone or on the internet, your order will trigger a $2 donation to our association!

• For on-line orders at www.zeidlers.com, simply select “TSMS” on the checkout screen list of organizations.
• For phone or in-store orders, just mention the Helping Hands program and “TSMS”.

Zeidler’s offers beautiful fall and holiday arrangements and beautiful gifts so be sure to keep this in mind as you begin your holiday shopping! Also, flowers make a wonderful birthday surprise and we know a few people who are celebrating this month…

HAPPY BIRTHDAY TO YOU!!
Joetta Staughan
Michael Crane
James Williams
Fred VanVleit
Debbie Halfacre
Stacy Chambers
Kat Roessler
John Stanley
Jill Chanault

If you would like to have your birthday included in our newsletter, please send a handwritten 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. Kenmore Drive in Evansville, IN 47714. Flowers make a wonderful birthday surprise and we know a few people who are celebrating!

You can help provide support, care and hope…right here at home!

Remember the Tri-State Multiple Sclerosis Association in a Bequest When you and family members are developing estate plans, we hope that you will consider a gift to the Tri-State Multiple Sclerosis Association. Your attorney can offer several ways for you to create a legacy that will make a difference to individuals in the tri-state with MS.

We need your help! Sign up with 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. Ask your family, co-workers and neighbors if they would mind helping us by signing up with an eScrip card to use at Schnucks. We would be glad to come to your business and sign up your co workers. Give us a call!

Schnucks and Kraft have teamed up to help Tri - State Multiple Sclerosis Assoc Inc earn an EXTRA 3%! Use your Schnucks eScrip card and when you purchase select Kraft items, we can earn an extra 3% of the purchase price!

Gifts of Cash: Individual donors contribute the majority of cash donations to our association. An unrestricted gift for the greatest needs is a particular benefit, but gifts may be designated for specific purposes if desired by the donor. Donations can be made by mail to the Tri-State M.S. Association, 971 C. Kenmore Drive, Evansville, IN 47714

We need your help to Spread the Word about the Tri-State MS Association Do you belong to a Club, Rotary, Kiwanis, or Church that would be willing to have the Tri-State MS Association as a guest speaker? Would your company be interested in having us come talk about what we offer in the community? This would be a wonderful opportunity for them to get involved and start a team for the Autumn Walk! The Tri-State MS Association is proud of the many services we offer and that all money raised stays in the tri-state area serving individuals with MS and their families.

If you have a contact name or a suggestion, please give us a call 423-5943 or 1-866-514-4312 or e-mail director@tristate.ms.

Internet-based giving: Donations can be made through a paypal link on our website at www.tristate.ms Did you know that when you shop over the internet through our website (see the iGive icon on the homepage of our website), you support our association? Right now there is even a promotion that could allow us to win a bonus. Go window shop today at www.Surfathon.com and our cause can win!

Volunteerism: The Tri-State M.S. Association benefits greatly when you tell a friend about the many services provided by our association. Join us for programs and events and bring that friend with you. Also, let your employer know you support the Tri-State M.S. Association. Debbie Hebbeler is willing to meet with business owners, managers, or groups; please call her if you know someone who is interested in learning more about our association.

Thank you for your support of the Tri-State Multiple Sclerosis Association. We ask for your continued help with a tax deductible donation. Your generosity enables us to fulfill our mission to enhance the quality of life for individuals living with multiple sclerosis in Southern Indiana, Western Kentucky, and Southern Illinois. Mail to Tri-State MS Association, 971 C. Kenmore Drive, Evansville, IN 47714 or make on line through PayPal.

NEWS YOU CAN USE

Teleconference Schedules:
Did you know that you can dial into MS programs from your own home?  Simply call the toll free number in advance to pre-register and the host will provide instructions on dialing into the program.  Don't worry, when the program is underway, the phone lines are set up to block your voice and whatever is going on in the background at your house.  Just listen in and learn!
Also, most teleconferences are archived on the website so that you can view the program even after it is over.  Sometimes you can even print the transcripts.

Healthtalk: 1-800-522-3254 or www.healthtalk.com
This website offers teleconferences, blogs (topic-driven exchange), audio stories, and live programs on a number of medical conditions, including MS.

MS Active Source: 1-866-955-9999 or www.MSActiveSource.com
See website for "Living Well with MS" events
First Tuesday/Third Tuesday of month: Newly diagnosed teleconferences

Shared Solutions: 1-800-823-1880 or www.sharedsolutions.com

MSLifelines: 1-877-447-3243 or www.mslifelines.com / www.msinbalance.com

MS Pathways: 1-800-788-1467 or www.mspathways.com

MSF: 1-888-MSFOCUS or www.msfocus.org
Find M.S. forums, news briefs, live chats, and more on this website.

MS World: www.msworld.org
Look at this website for chats, e-mail groups, and other information.

Help is only a phone call away…The Tri-State MS Association!
423-5943 or toll-free 1-866-514-4312

We are blessed in this tri-state area to have a local association providing services to people living with M.S. and their family members. We want you to take advantage of those services and to help us spread the word to others living with or affected by this disease.

Some of the services we provide include:
• Seven local support groups
• M.S. Mentors-people living with M.S. who are willing to meet with or talk by phone with newly diagnosed individuals
• Educational programs
• Lending library
• Referrals to doctors, home care agencies, rehabilitation providers, vocational counselors, pharmaceutical companies, and more
• Social events-it is important to build relationships with other people who can truly understand what it means to live with M.S.
• Financial assistance
• Carepartner services and family programs

Susan Reynolds, nurse educator for the Tri-State M.S. Association, welcomes appointments at the office or she is glad to talk to you by phone. She can help address questions regarding M.S. medications, side effects, symptom management, or the disease in general. She can also advise you regarding obstacles you encounter because of M.S. She herself has been living with the disease for a number of years.

Offering support, care, and hope…right here at home! Call us today!