MS Connection Newsletter

Transcription

1 Spring 2014 Kentucky-southeast indiana chapter MS Connection Newsletter pictured left to right: Stacy Funk (Chapter President), Rick Sexton (Board Member), Bailey Preston (Programs Manager), and Brad coffey (Public policy Intern) in washington, d.c. at the public policy conference. INSIDE THIS ISSUE 3 walk ms is kicking off 6 riding with hope 9 advocate for change 12 volunteer spotlight

2 2 MS connection: Spring 2014 Connect with us online: Kentucky-Southeast Indiana Chapter Like us: Follow us: Pin with us: Connect with us: meet the staff Stacy Funk Chapter President Jerika Amos Sr. Development Manager Trinity Campisano Development Manager Mary Carabella Development Manager Shelby Jett Operations Manager Cathy Kemple Office Manager Bailey Preston Programs Manager National Multiple Sclerosis Society Kentucky-Southeast Indiana Chapter 1201 Story Avenue, Suite 200 Louisville, KY Chair: Michelle Husted Vice Chair: Diana Quesada Treasurer: Bob Montgomery Secretary: Debbie Nelson Chapter President: Stacy Funk 2014 National Multiple Sclerosis Society, Kentucky-Southeast Indiana Chapter 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.

3 nationalmssociety.org walk ms is kicking off! February and March have been full of excitement for our upcoming spring walks! Walk MS Bell County kicked off our event season with their first ever Bell County Kick Off at Middlesboro Mall in conjunction with the 2nd Annual Chocolate Craze hosted by the Bell County Chamber of Commerce on February 11. The Chamber raised $370 for Walk MS Bell County that night! Walk MS Bell County was held on Saturday April 12 at Middlesboro High School and was another great success in large part to Walk MS Chair Ashley Cambron and her committee. The Myelin Warriors hosted a silent auction, J Frank White Academy painted faces, Big Adventure Inflatables provided bounce houses, Emily Wakin Photography provided photography, Bobby Brumbach Rhythm Source Productions provided music and The 3 Pineville Sun-Cumberland Courier was also on hand to take pictures for the newspaper and interview some of the participants. Pictured left to right: Ashley cambron and nina shoemaker Thank you to this year s Walk MS Bell County Sponsors: Middlesboro Walmart #739, Genzyme, Superior Van & Mobility, Novartis, Home Federal Bank, Bell County Chamber of Commerce, LGE KU, Michael D Bowling Law Office, J.R. Hoe And Sons, and Big Adventure Inflatables. Walk MS Lexington Kick Off was hosted at Longhorn Steakhouse on March 29. Despite the pouring down rain, several teams attended and over 30 participants. Thank you to Longhorn for providing a terrific lunch for everyone free of charge Walk ms: bell county Walk MS Lexington is scheduled for Saturday May 31 at RJ Corman (rain or shine). The site continued, page 4

4 4 MS connection: Spring 2014 will open at 9:00 AM and the walk will officially begin at 10:00 AM. We ll have lots of vendors, food and drinks for all participants with a free lunch immediately following the walk. Register today at or call toll free the kruer familey at walk ms louisville kick off Wendi and mike keene at walk ms lexington kick off Walk MS Louisville hosted its Kick Off Party with the 4th Annual Donut Building Contest on March 15. This was our largest year ever with over 130 participants attending. Dawne Gee, from WAVE 3 TV, was our Emcee again and our lifelong cheerleader for people with MS. Walk MS Louisville is scheduled for Saturday May 31 at Waterfront Park Festival Plaza. The site will open at 8AM but this year our walk will begin at 10AM. This gives our participants more time to gather their teams and enjoy all the vendors our walk has to offer. This year s vendors include; Krispy Kreme, Jason s Deli, May Creations (MS Jewelry soft serve ice cream, slushies and many more! After the walk we will be serving a free lunch to all participants. Next door to our walk this year will be Kosair s Kickballin for Kids Sake beginning at 11:00 AM they will have an extra kickball field for those who want to play and food and beer trucks too! Attention All Teams: You are welcome to set up your own pop-up tent for your team area with signs and decorations. If you would like to sell items or host a raffle at your team tent for your fundraising efforts, don t hesitate. Please make sure and contact Mary Carabella at if you would like to do this. walk ms: lexington walk MS: Louisville Saturday, May 31, 2014 For more information contact Mary Carabella at or mary. carabella@nmss.org. It s not too late to register TODAY at

5 nationalmssociety.org Individual tickets are available for $300. Sponsorships are available upon request for $2,400, $5,000, and $10,000. To make reservations, please contact Maria Wheatley at mariau@macconstruction. com or A special thank you to Board Member, Rick Sexton, our Walk MS Pulaski County Committee Chair. He has lead Somerset and Pulaski County well again. The Walk was on April 26. Check out our Summer MS Connection to find out more! Country Cures MS, produced by Jimmy Jones in Paducah, KY took place on April 19. We want to thank Jimmy and his amazing committee for hosting this first time event and will be sure to update you with more information in our next Newsletter.

6 6 MS connection: Spring 2014 Ways to Give Riding with hope By Marleigh Brown When I was diagnosed with multiple sclerosis four years ago, I cried. I cried a lot. Not in public, and not in front of my three young children. But I cried privately, mourning the Photo credit: Joe Shymanski loss of the woman I once was. I was distraught and angry, and everything in between. Most of all, I was scared. Scared that MS was taking my healthy body and mind, and with them, my hopes and dreams. Yet today, in spite of those emotions, I also feel lucky. Lucky, because I have hope. This gives me hope that someday soon we will find a way to end MS forever and repair the damage already done. With this hope, we may all be scripting a different ending to our stories. To truly understand hope, I need to tell you a story about a special woman named Ida. I participate in Bike MS with her photo in my pocket. It was taken in April 1937 when she was just 23 years old a beautiful girl, vibrant and alive. She had been spring skiing at Tuckerman s Ravine, and is leaning on a clunker of a car facing into the sun. She s wearing a halter top and shorts, and black boots with dark socks, which accentuate I Ride with MS participant Marleigh Brown crosses the finish line. I Ride with MS is proudly supported by Genzyme, a Sanofi company. Participant jerseys are provided by Primal Wear, the official cycling apparel partner of Bike MS. her strong muscular legs. She had an unruly mane of dark curly hair in those days. A talented painter, Ida had a funky style all her own. She smiled like a lady, but had her hand on her hip and her chin lifted, giving the camera a bit of attitude. This woman is my grandmother, but not the grandmother I knew. The picture was taken six months before she married and went on to become a mother of six. It was taken a whole decade before MS turned her life upside down, chiseling away at her hopes and dreams. Piece by piece. Attack by attack. With nothing to stand in its way. Ida s diagnosis took a while without MRIs and the understanding of the disease we have today. At first, she didn t tell anyone. But soon, she

7 nationalmssociety.org wasn t able to hide her symptoms. Why did she choose to say nothing, to do nothing about her MS? Because there was nothing she could do. Because back then, there was nothing anyone could do no research, no treatments, no disease-modifying drugs. Back then, there was no hope. When one of my children raises that dreaded question, Mommy, am I going to get MS? I hope to answer with conviction, No. Absolutely not. I knew Ida simply as Grammy, and I remember driving to the nursing home with my father to pick her up one Thanksgiving. I can still see her waiting for us, like a snapshot in my mind, lying in her hospital bed, staring silently toward the window. I watched as my father lifted her from her bed to her wheelchair, carrying her the way you d cradle a helpless child, or the way you d hold a mother who was living with MS. This is the grandmother I knew, the MS I knew. And the line was so blurred that they were one and the same. I even remember asking my father, if I was going to get MS someday. I don t remember his exact words, but here we are today, thirty-something years later. I was diagnosed with MS at age 36 the very same age as Ida. The similarities in our stories are unnerving, but I focus on the differences in our stories instead. I am lucky that my doctors caught my MS early with the help of today s MRIs. And I am grateful for choices for the wide selection of medications available to slow progression by injection, infusion, even oral pill, and also for the drugs to manage symptoms and attacks. All of these treatments were only discovered in the last two decades, and over half were discovered in the last decade alone. This gives me hope that someday soon we will find a way to end MS forever and repair the damage already done. With this hope, we may all be scripting a different ending to our stories. When one of my children raises that dreaded question, Mommy, am I going to get MS? I hope to answer with conviction, No. Absolutely not. Hope is a beautiful thing. And today we have hope. Hope that my grandmother didn t have. And hope that all of our children will know a world free of MS. These Opening Remarks were delivered by Marleigh Brown at the 2013 Bike MS Cape Cod Getaway. Brown lives in Massachusetts, where she participates in the I Ride with MS program, which has expanded across all 100 Bike MS events in 2013, thanks to the support of Genzyme, a Sanofi company and Primal Wear. Learn more at

8 8 MS connection: Spring 2014 Don t miss out on Bike MS: Bluegrass, Bikes & Bourbon on May 17 and 18! It s more than just a ride Bluegrass, Bikes and Bourbon will be an unforgettable town day journey. Enjoy the sights of the Bluegrass State and our finest bourbon offerings; stay for the challenge, camaraderie, and the knowledge your making an impact in the lives of people living with MS. This amazing adventure offers several unique routes. Day one choose a 40, 60, or 100 mile route ending with a dinner and party at Four Roses Distillery. Day two choose a 36 or 50 mile route with a big finish line celebration sponsored by West Sixth Brewery at Gallrein Farms. Visit for more information. Can t join us for the ride on May 17 and 18? Consider being a Virtual Cyclist and still help raise funds to create a world free of MS! VOLUNTEERS NEEDED Help us to make Bike MS a huge success! Each volunteer s contribution, large or small is critical to the success of the event. There are a variety of volunteer opportunities available: Rest Stops, Registration/Packet Pickup, Site Set Up & Tear Down, Bike Check-in/ Check-out, HAM Radio Operators, SAG Drivers, etc. Volunteers provide key support to Bike MS and we couldn t do it without you! Register to be a Bike MS volunteer or jerika.amos@nmss.org or call for more information.

9 nationalmssociety.org advocate for change MS Awareness Week was March 9-13, 2014 and to spread awareness, the Kentucky-Southeast Indiana Chapter of the National MS Society lit the ramp to the Big Four pedestrian bridge in Louisville orange. We also received proclamations for MS Awareness Week from the cities of Frankfort, Hopkinsville, Louisville, Paducah, and Somerset as well as a proclamation from the Commonwealth of Kentucky. In addition, we started a campaign to raise awareness at the grassroots level, asking everyone to tell five people about MS for five days. 9 Ed Whitfield joined the MS Caucus. Congressman Brett Guthrie is also co-sponsoring HR 942, a bill to expand Medicare access to complex rehabilitation technology. Congressman John Yarmuth and Andy Barr both signed on to support increases in NIH funding. A special thank you to our MS Activists, Stephen Kirzinger, MD (Board Member), Rick Sexton (Board Member), and Brad Coffey (Public Policy Intern) for attending the Public Policy Conference and representing out Chapter so well. Save the date for our fall walks pictured left to right: Bailey Preston, U.S. Representative Andy Barr, Stephen Kirzinger, and rick sexton. March was the National MS Society s 23rd annual Public Policy Conference. The Kentucky-Southeast Indiana Chapter met with 43 other chapters to lobby Members of Congress for increased National Institutes of Health funding, greater access through Medicare for Complex Rehabilitation Technology, and to ask our legislators to join the Congressional MS Caucus. This year, we were able to meet with all eight of our elected officials and/ or their staff. Due to our efforts, Congressman Walk MS: Central Kentucky Saturday, September 6, 2014 Walk MS: Paducah Saturday, September 13, 2014 Walk MS: Bowling Green Saturday, September 27, 2014 For more information contact Mary Carabella at or mary.carabella@nmss.org. Register today at become our friend on facebook!

10 10 MS connection: Spring 2014 best of louisville Come one, come all! Come experience the Best of Louisville! Join Louisville Magazine and the National MS Society as we present the 29th Annual Best of Louisville presented by Hilliard Lyons & VIA Studios on July 31, Come see the NEW Best of Louisville at our NEW venue, Play Theater and Nightclub. Enjoy live music, food and drink vendors, and so much more! Celebrate everything that makes our city great as we release the annual Best of Louisville issue, filled with the best places, people and things in this city as selected by you the reader and staff. More details to come so STAY TUNED and SAVE THE DATE! For more information or questions, please contact Trinity Campisano at or or visit bestoflou. com. Calendar programs Join us at one of our two locations for our Healthy Steps Lunch Bunch series! Participate in an educational and support program from 11:30 AM to 12:30 PM. Bring your caregivers, family, and friends and enjoy a FREE lunch. Space is limited, so please RSVP by calling , option 1. Lexington Lunch Bunch June 30, July 28, August 25 **May 26 Cancelled Due to Holiday** Last Monday of the month at Cardinal Hill in the Center of Learning Room 3, on 2050 Versailles Road in Lexington. Louisville Lunch Bunch June 3, July 1, August 5 First Tuesday of the month at Kosair Charities in the Community Room at 982 Eastern Parkway in Louisville. You are invited to a free series of informative conference calls on a variety of topics for people living with MS and their families. All teleconferences are from 7:30-8:30 PM. May 13 - Overcoming Cognitive Challenges August 12 - Alternative Therapies in MS To register: Call , option 1.

11 11 nationalmssociety.org talk ms group meetings Bowling Green Contact Tim at (270) :00 PM, Sky Rehab Clinic 2nd Tuesday of each month Frankfort Contact Michelle at (502) :30 PM, Frankfort Regional Medical Pavilion 2nd Friday of each month Lexington Contact Leslie at (859) :30 AM, Location TBA 1st Wednesday of each month Madisonville Contact Dan or Carolyn at (270) :00 PM, Trover Clinic 8th Floor 4th Monday of each month Middlesboro Contact Nina at (606) :00 PM, Middlesboro ARH 2nd Tuesday of each month Paducah Contact Jessica at (270) :30 PM, Lourdes Hospital Marshall Nemer Pavilion, Borders Room 1st Tuesday of each month Ohio County Contact Tim at (270) :30 PM, Ohio County Wellness Center 1st Tuesday of each month Somerset Contact Rick at (606) :00 PM, Lake Cumberland Regional Hospital 3rd Thursday of each month winchester Contact Joy at (859) :00 PM, BCTCS 1st Tuesday of each month Partners in MS Care The National MS Society s Partners in MS Care program recognizes and supports quality MS care. The Kentucky- Southeast Indiana Chapter currently has two designees: KentuckyOne Health Neurology Associates Cary Twyman, Neurologist Gregory Anderson, Neurologist Warren Chumley, Neurologist 1201 Majestic Dr. Lexington, KY Baptist Health Lexington Dana Lykins, Physical Therapist 1775 Alysheba Way, Suite 10 Lexington, KY

12 Free Matter for the Blind or Handicapped 1201 Story Avenue Suite 200 Louisville, KY Volunteer Spotlight: Brad Coffey Brad Coffey, Public Policy Intern, has an MA in Political Science from the University of Louisville. He grew up in Oldham County. The creation of the Affordable Care Act spurred his interest in health policy and how it would help those with a chronic disease and illness. He remembered meeting with National MS Society activists when he interned in Frankfort during the 2010 legislative session. As an intern, he has been an advocate for people with MS and has lent his expertise in the political process to coordinate the Chapter s trip to Washington D.C. He was able to Brad Coffey, Public Policy Intern travel with us to the Public Policy Conference to assist with our advocacy efforts. He raised awareness for MS through a proclamation drive, is increasing chapter outreach to state and local government, and has helped provide services to people with MS. We are delighted to have Brad in the office with us every day. He is instrumental to our advocacy efforts!