March 2014 - Tri-State Multiple Sclerosis Association

971-C S. Kenmore Drive
Evansville, Indiana 47714
Phone: 812-423-5943 Toll-free: 1-866-514-4312
Webpage: www.tristate.ms
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March 2014 Newsletter
Offering support, care, and hope…right here at home!
Indiana Support Group Meeting Dates
Evansville, IN support group will meet Saturday, March 8th, at 10:00 a.m. at the TSMSA Office,
971-C S. Kenmore Drive. Join us for an open discussion and refreshments.
Contacts: Nita Ruxer / 812-479-3544 or Sharon Omer / 270-333-4701.
Princeton, IN support group will meet Saturday, March 22nd, at 10:00 a.m. at Gibson General
Hospital, 5th floor, first room on right. We’ll celebrate getting back together with a Pizza Party!
Contact: Alice Burkhart / 812-782-3735.
Tell City, IN support group will meet Tuesday, March 11th, at 11:00 a.m. at the Twilight Towers,
1648 10th Street, in the cafeteria. Join us for an open discussion and refreshments.
Contacts: Terri Hasty / 812-649-4013 or Gayle Taylor / 812-547-4941.
Washington, IN support group will meet Saturday, March 15th, at 10:00 a.m. at Daviess
Community Hospital. Join us for an open discussion and refreshments.
Contacts: Cindy Kalberer / 812-254-6735 or Fran Neal / 812-259-1565.
Kentucky Support Group Meeting Dates
Henderson, KY support group will meet Saturday, March 1st, at 10:00 a.m. at Redbank Towers,
737 Kimley Lane. Meeting room is on the 1st floor, in the recreation room.
Join us for Special Guest, Phillip Brann, who will lift your spirits with his beautiful singing!
Contacts: Debbie Whittington / 270-827-8298 or Lori Bumgardner / 270-577-5510.
Owensboro, KY support group will meet Monday, March 10th, at 6:00 p.m. at HealthPark Owensboro Health, 1006 Ford Ave, Owensboro, KY. We will go over to Progressive sports
Therapy for a demonstration of the Alter G Anti-Gravity Treadmill.
Contacts: Susan Reynolds / 812-228-6100.
Illinois Support Group Meeting Dates
Carmi, IL support group meet Thursday, March 27th, at 6:00 p.m. at First Christian Church, 504
Bohleber Drive. Join us for an open discussion and refreshments. Weather permitting.
Contacts: Dale or Carla Shuler / 618-384-9964 or TSMSA office / 1-866-514-4312.
Fairfield, IL support group will meet Saturday, March 1st, at 11:00 a.m. at Fairfield Memorial
Hospital in the conference room. PLEASE NOTE NEW STARTING TIME!
Join us for a free lunch, compliments of Fairfield Hospital.
Contacts: Carol Anne Greenwood / 618-847-8364 or TSMSA office / 1-866-514-4312.
The Mission of the Tri-State Multiple Sclerosis 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.
March Calendar of Events
March 5th, Wednesday, FREE Yoga Classes Resume!
Lorien Appman, MPT of Progressive Health Rehabilitation, will be hosting
yoga classes at 11:30 a.m. every Wednesday in March
(5, 12, 19, 26) at the TSMSA office. Join us for this relaxing class.
Call the TSMSA office to RSVP: 812-423-5943 / 866-514-4312
March 6th, Thursday, Genzyme Dinner Program
Speaker: Dr. Lori Guyton, Neurologist, Southern Illinois
Time: 6:00 p.m.
Location: Haub House, 101 E Haub St, Haubstadt, IN
RSVP: TSMSA 812-423-5943 or 1-866-514-4312
March 12 & 13, Wednesday & Thursday, Old National Bank
Book Sale to Benefit TSMSA (info and coupon below)
Time: 9:00 a.m. – 5:00 p.m.
Location: ONB, One Main St., Downtown, Wayne Henning Atrium
A percentage of sales will be donated to the Tri-State MS Association
March 13th, Thursday, Questcor Dinner Program
Speaker: Dr. Randy Cox, Neurologist, Owensboro, KY
Time: 6:00 p.m.
Location: Moonlite Bar-B-Q, Owensboro, KY
RSVP: 812-423-5943 / 1-866-514-4312 by March 10th.
March 17th, Monday, Evansville Massage Specialists,
“March Massage Madness” Fundraiser to benefit TSMSA!
Time: 9:00 a.m. to 7:00 p.m.
Location: Evansville Massage Specialists, 971- A S. Kenmore Dr. Evansville
(Next door to the TSMSA office.)
Stop in and make a donation (of any $ amount) to TSMSA and you will
receive a wonderful massage by the Evansville Massage Specialist! While you
wait, enjoy some delicious snacks and enter for one of many giveaways!!
March 18th, Tuesday, Guys Only Night, Questcor Dinner Program
Speaker: Dr. Rod Warren, Neurologist, Evansville, IN
Topic: Calming your “MS Madness” with Acthar
Time: 6:00 p.m.
Location: The New Marriott Inn East, 8105 E. Walnut Street, Evansville.
Around the lake from Cracker Barrel. (Call TSMSA for directions)
RSVP: 812-423-5943 / 1-866-514-4312 by March 17th.
Kick back after the program and enjoy the first March Madness Ballgame!
New Copaxone dosing approved for fewer injections.
Contact your Neurologist for more information.
March 20th , Thursday, Newsletter Stuffing
Time: 11:30 a.m.
Location: TSMSA Office
Great opportunity to help TSMSA and make some new friends!
March 27th, Thursday, Acorda Therapeutic Dinner Program
Speaker: Dr. Carry Twyman, Associates in Neurology (New Speaker)
Time: 6:00 p.m.
Location: Log Inn, 12491 S. 200 E, Haubstadt, IN 47639
RSVP: TSMSA 812-423-5943 or 1-866-514-4312 by March 24th.
Upcoming Programs
April 4th, Friday, Acorda Therapeutic Dinner Program
Speaker: Jennifer Patterson. NP, MSCN, Norton Healthcare, Louisville, KY
Time: 6:00 p.m.
Location: Moonlite Bar-B-Q, Owensboro, KY
RSVP: TSMSA 812-423-5943 or 1-866-514-4312 by March 31st.
April 5th, Saturday, “It’s All About ME!” Weekend
Time: Registration begins at 9:00 AM
Location: Holiday Inn, Hwy 41, Evansville, IN
RSVP to TSMSA: 812-423-5943 / 866-514-4312 by March 28th.
(See attached flyer for more information.)
June 2, Monday, The Ted Donosky MS Golf Scramble
Location: Rolling Hills Country Club
Save the Date! Sponsorships available! Call TSMSA for more information!
June 28th, Family Weekend at Camp Carson in Princeton, IN.
Come join us for relaxation, fun, and new friends! See our website or flyer for
more details! Sign up today: limited rooms available! Save the Date!
Reminder, the Tri-State MS Association’s Autumn Walks are in the Fall.
The Autumn Walks are scheduled for, Owensboro, KY, Sunday, October 26th at Moreland Park,
and Evansville, IN, Sunday, November 2nd at Harrison High School. Any walks in the spring are
not affiliated with Tri-State MS Association.
Energizing Indiana Home Energy Assessments (FREE) can help you raise your
home’s performance, lower energy consumption, improve in-home air quality and increase your
home’s value. Sign up (by calling TSMSA) and Energizing Indiana will call to schedule your
appointment. When your Home Energy Assessment is completed, TSMSA will receive $25 from
Energizing Indiana Energizing. Indiana Home Energy Assessments can help you raise your
home’s performance, lower energy consumption, improve in-home air quality and increase your
home’s value. Call TSMSA 423-5943 to sign up today!
Send Flowers for birthdays or any 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.
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, Evansville, IN 47714.
HAPPY BIRTHDAY TO YOU!!
Joetta Straughan
Amanda Harvey Michael Crane
James Williams
Fred Van Vliet
Debra Halfacre
Stacy Chambers
Kat Roessler
Jill Partain
John Stanley
Jill Bean
Jamie Zellers Richard Daly
We would like to sincerely thank St. Mary’s Health System for their support
of the Tri-State MS Association’s monthly newsletter. Thank You!
New MS Drug, Lemtrada, rejected by FDA
Susan Reynolds, RN MSCN
Many MS patients have been waiting to hear if the new MS drug, Lemtrada (alemtuzumab) would
be approved by the FDA. Lemtrada was rejected by the FDA in Dec. of 2013. Lemtrada has
already been approved in the US to treat leukemia under a different name (Campath). It has also
already been approved in Canada, the European Union and Australia to treat relapsing remitting
MS. This month, February of 2014, Lemtrada was also approved in Mexico to treat relapsing
remitting MS. Lemtrada is now also under review in other countries.
The FDA has taken the position that Genzyme has not submitted evidence from adequate and well
controlled studies that demonstrate the benefits of Lemtrada outweigh its serious side effects. The
company notes in a release, “the FDA has requested that Genzyme complete one or more
additional clinical trials of different design and execution for marketing approval of Lemtrada.
Genzyme plans to appeal the FDA decision.
The Lemtrada clinical development program included two randomized phase III studies (CARE
MS I and CARE MS II) comparing treatment with Lemtrada to high dose subcutaneous interferon
beta 1a (Rebif) in patients with relapsing remitting MS who had active disease and were either
new to treatment (CARE MS I) or had relapsed while on prior therapy (Care MS II) as well as an
ongoing extention therapy (CARE MS I). The two clinical trials showed that Lemtrada reduced
relapse rates over 2 years by about half compared to patients on Rebif (interferon beta 1a).
Lemtrada is a monoclonal antibody that targets CD52, a protein abundant on T and B cells,
thought to be responsible for the damaging inflammatory process in MS. Lemtrada has a dosing
and administration schedule of two annual treatment courses. The first treatment course is given
by an IV infusion on five consecutive days and the second is given on 3 consecutive days 12
months later.
The main safety concerns include auto immune thyroid problems (30% of patients developed
thyroid related problems) and idiopathic thrombocytopenia purpura (ITP), for which patients will
have required monitoring while on Lemtrada. ITP is a serious condition causing low platelet
counts in the blood and can lead to dangerous bleeding. In clinical trials, one patient died of ITP.
Genzyme now has a special safety monitoring program in place for patients taking Lemtrada.
Other side effects of Lemtrada are infusion associated reactions, infections (upper respiratory and
urinary tract), headache, rash, nausea and fever.
Genzyme strongly disagrees with FDA’s conclusions and plans to appeal the agency’s decision.
“We are extremely disappointed with the outcome of the review and the implications for patients
in the U.S. suffering with multiple sclerosis who remain in need of alternative therapies to manage
a devastating disease,” said Genzyme President and CEO, David Meeker, MD, in the statement.
He also indicated that they strongly believe the clinical development program which was designed
to demonstrate how Lemtrada compares against an active comparator as opposed to placebo,
provides robust evidence of efficacy and a favorable benefit-risk profile. This evidence was also
the basis for the approvals of Lemtrada by other regulatory agencies around the world. As
mentioned earlier in this article, Lemtrada has already been approved in The European Union,
Canada, Australia and most recently, in Mexico.
Individuals impacted by MS who want to have their voice heard on this decision can contact the
FDA directly to state their views about this decision. Send an email to [email protected].
Sources:
News Release, Genzyme
FDA: “Genzyme Alemtuzumab Advisory Committee Briefing Document
FDA Declines Approval for Alemtuzumab (Lemtrada) in MS. Medscape. Dec. 30, 2013.
MS Awareness
Emily Ellison, Social Worker
This MS Awareness article is from the March 2013 newsletter, but we felt it was worth a reprint!
Emily was one of our USI interns. Emily has graduated with a degree in social work. She
continues to volunteer her time to TSMSA. We appreciate her continued help and support!
It’s March! That means it is Multiple Sclerosis Awareness month! We will be celebrating
awareness this month through all of our programming. Knowledge is power: attend our March
programs to find out better ways to address your specific symptoms and to build a support
network of friends who understand just what you are going through. See our calendar for the long
list of programs created just for you!
Not only is it MS month, but it is also Disability Awareness month! It is funny how the two can
go hand in hand. When you think about having MS, do you consider having a disability? This is
truly a question that everyone could answer differently. There are many stages of MS, as we all
know. What stage you are in and how well you take care of your MS plays a big role. MS affects
everyone in a different way: it is you and only you who can choose to make living with MS a
disability or not.
Be continuously active and keep positive thoughts; follow your therapies as prescribed that best fit
you. There are hard days and there are good days. We know that MS can change your life
dramatically. MS can turn your whole life upside down and it can be hard to get back on your
feet. Small things have now become large challenges; this is where Tri-State MS Association
comes in. We are here to offer support, care and hope... right here at home! TSMSA has many
resources, a nurse educator to answer your questions, support groups and programs, fun events
and always a friendly ear for listening! Just because you are living with MS does not have to
mean you are disabled. You have MS but don’t let MS have You!
“The only disability in life is a bad attitude.” Scott Hamilton
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. Terrell Fulkerson
Biogen Idec
Dr. Rick Yeager
In Memory of Joni Gentry
In Memory of Anne Elpers
Bruce Adler
Mary Howard
In Memory of Michael Alvis
Ms. Jane Martz
Parkview Care Center
Mr. & Mrs. Jerry Vantrease
In Memory of Lois Levin
Fred Kent
It’s All About ME Weekend
Saturday, April 5th, Holiday Inn, Hwy 41 N., Evansville, IN
Agendas will be mailed when you register. Here is a draft of the day with more being planned!
Saturday April 5, 9:30-10:20am – Registration, Light Breakfast & Pampering begins!
Sessions Include: Listening to Your Inner Spirit and Nutrition, Dr. Kay Corpus, Henderson
Amprya may help with your walking, Jennifer Patterson, NP, MSCN
Zumba -Back by popular demand – Lori, Shannon and Annette
Acupuncture Center of Evansville, Charlene Fabiano
Money, Money, Money, Ben Joergens, ONB
Caregivers Session
And More to Come!
The Salon Professional Academy staff
will be offering free pedicures, manicures, hair styling and waxing!
The All About ME Weekend is fast approaching and we are excited that you will be joining us!
All workshops will take place on Saturday, April 5th, Holiday Inn, Hwy 41 N., Evansville, IN.
Joining us for Saturday only? The registration fee is $20 per person or $30 a couple. This includes
the pampering, sessions and all meals. (Please let us know if staying for dinner.)
Staying the night? The cost will be the above registration fee for the day plus $65.00 for a hotel
room. (Your choice of a one night stay (double occupancy): Friday, April 4 or Saturday, April 5th).
TSMSA will make the reservation with the hotel for you in your name.
If you would like to stay an extra night, please contact the hotel directly, 812-867-7999 and ask
for the Tri-State MS Association rate of $65.00. You will be responsible for making this
reservation of an extra night & for paying the hotel when checking in.
If you have any questions, please call the TSMSA office today! 1-866-514-4312 / 812- 423-5943.
ME WEEKEND RESERVATION - Please RSVP Today by mailing check to:
TSMSA 971- C. S. Kenmore Dr., Evansville, IN. 47714
Name: ___________________________________________________________
Name of Guest: ____________________________________________________
Room: Friday Night _____Saturday Night ____Handicap if available ___________
Bed: Queen ______________________ King______________________
Saturday ONLY: _______________
Please check meals you will be joining us for:
Saturday Meals: Breakfast _________ Lunch __________Dinner _____________

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