LIVING WITH MS MANAGING MS CHALLENGES · PDF filewellness research, including diet, ... including a phase 2 trial of ibudilast in ... a specific type of memory training improves

Greater Carolinas Chapter

SPRING 2015 GREATER CAROLINAS CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE:

5RESEARCH

8PROGRAM CALENDAR

10GET CONNECTED WITH SELF HELP GROUPS

16FUNDRAISING EVENTS

CONTINUED ON PAGE 3

LIVING WITH MS

MANAGING MS CHALLENGESBY LIZ THOMPSON, MS AMBASSADOR

When Barb Abrams was 40, Sherwood Forest fell on her head. “I had made a model of Sherwood Forest for my son using a piece of plywood, Popsicle sticks, tree branches and other fun stuff so his Lego men could play in there,” Abrams remembers. “I had put it on top of a shelving unit. One evening I opened one of its drawers and Sherwood Forest fell on my head.”

Four stitches and a month later, Abrams began experiencing numbness, tingling, zipper-like sensations and optic neuritis. Since she had experienced a blow to the head, she was sent to a variety of specialists. “The pain from the optic neuritis got so severe that my husband demanded I be hospitalized for constant monitoring so they could figure out what was going on,” Abrams says. It was then that she was diagnosed—not

with any lingering effects from her head injury, but with multiple sclerosis.

BRINGING MS TO LIGHT

MS can be a difficult disease to diagnose, and some symptoms may be ignored or mistaken for other conditions.

Researchers have not found any evidence for a relationship between physical trauma and MS, and Abrams knows her disease is unrelated to the head injury. Now 63, she has gone on to learn

BARB ABRAMS IS A PASSIONATE BIKE MS PARTICIPANT

2 MS CONNECTION: SPRING 2015

LETTER FROM THE PRESIDENT: GREETINGS! These past few months we have been busy making connections count in the MS movement. Thanks to each of you who partnered with us to make our voices heard, increase MS awareness and fuel progress to help people living with MS to lead their best possible lives.

During MS Awareness Week, thousands of supporters used social media to increase visibility for multiple sclerosis across the US. With your tweets and posts, you generated an incredible buzz which led to actionable awareness – not only informing, but motivating our community to do something NOW to create a world free of multiple sclerosis.

At the same time, more than 300 activists took to Washington, DC to raise our voices through advocacy. We advocated for increases in MS research funding, development of a neurology database to help us better track data for those with multiple sclerosis and more funding for rehabilitative technology. We’ve already gained the support of our legislators in the Carolinas.

Following three town hall meetings in SC, our staff hit the road with three community rallies in NC, inspiring community leaders to continue expanding our efforts to broaden our impact. A community of more than 150 Carolinian Challenge Walkers took to the streets of scenic Savannah, GA raising more than $600,000! Hundreds of men and women came together for our Triad area MS Luncheons raising an additional $154,000. Across the Carolinas more than 8,000 Walkers are taking part in our second largest fundraising campaign. This year’s Walk MS goal is $1.2 million.

So, what’s next? We are gearing up for the most successful Bike MS campaign we’ve had as the Greater Carolinas Chapter as well as MS Service Day. Don’t miss out! We need each person who is motivated to engage in the MS movement to do so. Contact us and we’ll get you connected.

And, as always, if we can help you in some way, please reach out. We need to hear from you. Visit us online at MSconnection.org to ensure you are connected to our global MS community.

Sincerely,

Kristina Fransel McGraw Greater Carolinas Chapter President

CONNECT WITH US ONLINE:Greater Carolinas Chapter l [email protected] www.nationalMSsociety.org/greatercarolinas

Facebook.com/NMSSGreaterCarolinasChapter twitter.com/MS_GtrCarolinas youtube.com/GreaterCarolinas everyconnectioncounts.blogspot.com

3NATIONALMSSOCIETY.ORG | 1-800-344-4867

CONTINUED FROM PAGE 1

how to live actively with the disease and manage cognitive issues caused by her MS that affect her ability to remember names and numbers.

ABRAM’S HEAD INJURY PROVIDED THE CATALYST FOR HAVING THE TESTS THAT LED TO HER MS DIAGNOSIS.

“My husband’s name is Rick, my brother’s name is Rick and my brother-in-law is Richard. So I inevitably end up calling my husband ‘the man to whom I’m married,’” Abrams says. “I also call my son Jordan ‘boy’ and my daughter Eryn ‘girl.’ When Eryn got married, I told my new son-in-law that he would now be called ‘new boy.’” The only phone numbers she knows by heart are her own, her husband’s and one friend. To manage her symptoms, she writes everything down and works from three calendars.

Abrams’ family and friends have learned over the years how to help, sometimes finishing her sentences for her or finding the word she’s groping for. Perhaps most importantly, they keep her laughing. “My one dear friend has cancer and we laugh about her chemo brain and my MS brain. Between the two of us, we almost have a complete brain. I find that humor keeps me sane or at least from crying out of frustration,” she says.

RIDING ON

A teacher and artist for years, Abrams now continues to work as a substitute teacher. During an exacerbation at age 50, she bought her first bike. “I couldn’t lift my leg over the

bike and had an IV port in my arm for steroids. I was probably more optimistic than I should have been,” she remembers. However, in three years, she has improved her balance and is now able to let go of a handlebar to signal or reach for her water bottle. Some 15,000 miles later, the Powell, Ohio, resident has ridden over the Vail and Independence passes in Colorado—the latter with an elevation gain of more than 4,000 feet. And so, she is also a passionate Bike MS participant.

“I cannot run as I have drop foot and I lean to one side while walking,” Abrams says. “But I did a triathlon when I was 58. I can swim and ride. The running, obviously, was hideous.” However, she still finished second in her age group. She has also started down a new art path, attaching hand-drawn tiles to boxes she has made. She is hoping to get them into galleries around town. “Luckily, I don’t have to remember anything while I am making them!” she says, laughing. n

Writer Liz Thompson was diagnosed with MS in 1987, but has been symptomatic since 1970.

Originally published in Ohio Buckeye’s MS Connection newsletter.

MANAGING COGNITIVE CHANGESThere are ways to manage MS-related cognitive changes. To learn more about cognition and MS, visit www.nationalMSsociety.org/cognition.


NATIONAL MULTIPLE SCLEROSIS SOCIETYGreater Carolinas Chapter 3101 Industrial Dr. Ste. 210 Raleigh, NC 27609 1-800-344-4867

Board Chair: Jackie Jones Chapter President: Kristina Fransel McGraw Design: Christy Knutson, Moxie Speak

© 2015 National Multiple Sclerosis Society, Greater Carolinas 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.

DID YOU KNOW?

The National MS Society offers more programs and services than any other MS organization in the world.

We are increasing investments in wellness research, including diet, exercise and complementary and alternative therapies.

Everyone who wants to do something about multiple sclerosis can fuel progress.

The voices of people affected by MS are heard and drive change wherever it is needed.


RESEARCH

RESEARCH LEADS IN MSSignificant research progress was made in 2014, offering new leads that are driving efforts to stop multiple sclerosis, restore lost function, and end MS forever.

Here are some highlights:

STOPPING MS• A National MS Society-funded team shed new

light on immune cells known as macrophages, discovering a way to tell the difference between good and bad types of these immune cells in mice with an MS-like disease. This research opens up possibilities for therapies that target bad cells and spare good cells.

• The U.S. Food and Drug Administration approved Plegridy (peginterferon beta-1a, Biogen Idec) and Lemtrada (alemtuzumab, Genzyme, a Sanofi Company) for people with relapsing forms of MS. This means there are now 12 disease-modifying treatment options for those with the most common form of MS.

• In a multicenter study, African Americans with MS were found to have more visual impairment and faster thinning of the nerve fibers in the back of the eye than Caucasians with MS.

• Researchers in the U.K. found that for every year that passed after a person with MS stopped smoking, the risk for progression was reduced by as much as five percent.

FOR PEOPLE WITH PROGRESSIVE MS, A NUMBER OF STUDIES PROVIDED PROMISING RESULTS:• A phase 2, placebo-controlled clinical

trial of high-dose oral simvastatin (a medication used for high cholesterol) involving 140 people with secondary-progressive MS suggested that this pill was able to slow the rate of brain tissue loss over two years.

• An international team funded by the Society found that levels of vitamin D in serum early in the course of MS may predict later disease activity and progression.

• The International Progressive MS Alliance awarded its first round of 22 research grants – the start of an ambitious program that will invest at least $30 million over six years.

• The Society is funding clinical trials of nervous system-protecting approaches including a phase 2 trial of ibudilast in 250 people with progressive MS.

• Innate Immunotherapeutics leveraged Society commercial seed funding to launch a clinical trial of a treatment for progressive MS.

• Society-funded researchers at the University of Alabama at Birmingham found that weakness was improved and brain tissue increased significantly in 20 people with progressive MS under constraint-induced movement therapy (immobilizing a favored arm, forcing the weaker arm to do exercises and skilled movements). A larger trial is underway.


RESTORING LOST FUNCTION A number of potential MS therapies that hold the possibility of myelin repair moved forward in clinical trials, including an approach that tested the ability of an individual’s own mesenchymal stem cells to inhibit immune mechanisms and augment intrinsic tissue repair processes when infused into the veins of people with relapsing forms of MS.

In addition, there were positive results from a number of lifestyle and wellness-related studies, as follows:

• In a large sleep study that surveyed more than 2,300 people with MS, researchers found that 70% reported having at least one sleep disorder, but that 12% or fewer had received a diagnosis of, or treatment for, a sleep disorder. Treating sleep disorders experienced by people with MS could significantly improve quality of life.

• A clinical trial showed strong evidence that a specific type of memory training improves learning in people with MS and benefits other aspects of quality of life. Additionally, a pilot study revealed that clinical and MRI improvements were maintained six months after training ended.

• In a preliminary study of a salsa dance program for people with MS, researchers found improvements in gait and balance even three months after the 4-week program ended. The Society is now funding a larger, longer study that may lead to the use of dance as physical therapy for MS.

• The Society convened a Wellness Strategy Meeting with leaders in the fields of diet, exercise and psychology, including individuals who also directly live with MS, to identify gaps in knowledge and programming and to map out next steps for how these gaps might best be addressed.

ENDING MS FOREVER• In studies involving over 80,000 people,

the International MS Genetics Consortium identified more than 159 genetic variations related to MS.

• Collaborators at Yale, MIT, Harvard and elsewhere reported a new approach to understanding how subtle changes in genes may lead to the risk of developing MS and other immune diseases.

• Researchers in Sweden and California showed that adolescent obesity increased the risk for MS, and that this risk increased substantially in those with specific immune genes.

• Investigators found that those who reported taking cod liver oil at ages 13-18 had nearly half the risk of developing MS compared to those who never took cod liver oil or took it at other ages. n

To keep up to date on the latest MS research, visit www.nationalMSsociety.org/research or sign up for MS eNEWS at www.nationalMSsociety.org/signup.ollow the latest MS research, visit www.nationalMSsociety.org/research, or sign up for MS eNEWS at

www.nationalMSsociety.org/signup.


MONEY MATTERS

UPDATE ON WORK INCENTIVESBY STEVE NISSEN

As of January 1, 2015, Social Security beneficiaries received a 1.7% cost of living adjustment, or COLA. However, COLA affects more than the monthly benefit check that Social Security Disability Insurance (SSDI) recipients receive. It also affects certain work incentives that may prove useful when people with multiple sclerosis attempt to return to work.

THE TRIAL WORK PERIOD (TWP)For individuals who receive SSDI, the trial work period (TWP) allows them to retain their full financial SSDI benefits while they test their ability to work. The TWP comprises nine months in a 60-month time period (the nine months do not have to be consecutive). For 2015, the amount that a person with MS can earn to count toward the TWP has been increased from $770 per month gross income to $780 per month gross income. Full benefits continue during this time regardless of how much a person earns.

SUBSTANTIAL GAINFUL ACTIVITY (SGA)After a person completes their TWP, they can take advantage of the Substantial Gainful Activity

incentive, which helps people transition back to work. For 2015, the SGA has been increased from $1070 per month gross income to $1090 per month gross income for non-blind individuals. For individuals who are statutorily blind, the SGA has increased from $1800/month gross income to $1820/month gross income.

DO YOUR RESEARCHIt’s important to note that once a person’s monthly income exceeds the SGA, his or her SSDI benefits may cease. Before doing anything that could jeopardize your benefits, be sure to do your research on what impact work may have on your benefits. Below are some helpful tips:

• Contact your local Work Incentive Planning and Assistance (WIPA) program and speak with a Community Work Incentive Coordinator (CWIC).

• Visit www.socialsecurity.gov/work/WIPA.html for information about the WIPA program.

• Call the National MS Society at 1-800-344-4867 to speak with an MS Navigator who can connect you with your local WIPA program, or visit www.chooseworkttw.net/findhelp/.

• Learn more about Social Security work incentives by participating in a Work Incentive Seminar Event online webinar. For information about upcoming events, or to access archived webinars, visit www.choosework.net/wise. n

Steve W. Nissen, MS, CRC, is the Society’s senior director of Employment & Community Programs.


PROGRAMS & SERVICES “MIND, BODY & SPIRIT” SC CONFERENCE FOR AFRICAN-AMERICANS LIVING WITH MSMay 2 - Charleston, SC

Mark your calendars to join us for our 4th annual education conference for African-Americans living with MS and their families. This year’s conference will be held on Saturday, May 2nd with registration beginning at 9 a.m. and the program from 10 a.m. – 2 p.m. at the Hilton Garden Inn, North Charleston. The conference general session will be a panel on exercise, nutrition, and communication. Break-out sessions for people living with MS and care partners will be held after lunch. Vendors will be available with information on community resources. Cost is $5.00/person. A brochure with more details will be coming soon!

NORTH AMERICAN EDUCATION CONFERENCE “MOOD AND COGNITION – WHAT YOU CAN DO”

Learn why and how people with MS experience changes in mood and cognitive functioning, and the latest information on how these symptoms can be addressed — from physical activity, medications and counseling to self-management strategies. The program will consist of a video highlighting the experiences of people living with MS and health care professionals. Following the video, a health care professional will facilitate a question and answer period. Participants will also receive a program booklet on this topic.

CHARLESTON, SC: Thursday, May 77 – 8:15 p.m.Hilton Garden Inn 5265 International BoulevardNorth Charleston, SC 29418

KERNERSVILLE, NC: Friday, May 810:30 a.m. – NoonPaul J. Ciener Botanical Gardens215 S. Main StreetKernersville, NC 27284

AIKEN, SC: Saturday, May 16 10 a.m. – NoonSt. Paul Lutheran Church961 Trail Ridge RoadAiken, SC 29803

MYRTLE BEACH, SC: June 257 - 8:30 p.m.Speaker: Zara Melikyan Ph.D. – Department of Psychology, UNC-WilmingtonHilton Garden Inn2383 Coastal Grand CircleMyrtle Beach, SC 29577

UPCOMING TELECONFERENCESSex ed for Grownups – Intimacy in MSMay 19th and 21st

Gender Differences in MSJuly 21st and 23rd

Preparing for MS Doctor VisitsSeptember 15th and 17th.


SAVE THE DATE! ANNUAL MEETING AND EDUCATION CONFERENCES

Mark the date of Saturday, December 5th for the chapter’s Annual Meeting and Education Conferences in three different locations – Raleigh, NC, Charlotte, NC and Greenville, SC. More details will arrive in your mailbox in September, but please plan to join us at one of these great conferences!

CONTROLLING SPASTICITYTuesday, June 2nd6:30-8 p.m.

Speaker: Dean Lorenz, MDFlorence Rehabilitation Medicine

Hilton Garden Inn2671 Hospitality Boulevard - Florence, SC

THE TRIANGLE CAREGIVERS CONFERENCE

Caring for a loved one can be challenging and at times — overwhelming. Caregivers understand that they have a job to do as a full-time member of their loved one’s care team. Caregiving can be shared among you, your family, your case manager, therapist or even your doctor. Join us for a conference designed for respite, resolution and resources. Pre-registration is strongly encouraged. For more information

go to trianglecaregiversconference.org or call 919.719.6765.

Same conference, your choice of dates:Tuesday, June 16, 2015, 8:00 a.m. – 3:30 p.m.McKimmon Conference Center1101 Gorman St., Raleigh, NC 27606

Thursday, June 25, 2015, 8:00 a.m. – 3:30 p.m.Durham Convention Center301 West Morgan St., Durham, NC 27701

MS ADVENTURES KIDS CAMP

MS Adventures at Camp Chestnut Ridge is a weekend retreat for kids ages 10-14 who have a parent or guardian living with MS. It will be held this year on the weekend of August 7-9th and is offered to families free of charge. Kids are offered the opportunity to meet other children who share similar life experiences. Kids also participate in recreational activities such as swimming, canoeing, camp fires and other games. Hurry and request a registration packet before all of the spots are filled! To receive a registration packet for camp, please call 1-800-344-4867, option 1.


NORTH CAROLINA SELF-HELP GROUPSAlamance County• 2nd Thursday, 10:00 am, (Mar-June; Sept-Dec), Alamance Regional Medical Center, Private Dining Room, Annie 336-226-7712Beaufort County, NC• 1st Wednesday, 4:30 pm, Vidant Wellness Center, Washington, Sondra 252-916-5233Buncombe County• “Oh! You Look So Good” Group, 1st Tuesday, 6:00 - 8:00 pm, Grove Arcade Public Market, Conference Room, Asheville, Marci 828-298-1727, Virginia 828-683-9564• Awareness Group- MS Community of WNC, 1st and 3rd Thursday, 12:00-2:00 pm, West End Bakery & Cafe, Asheville, Leslie 828-772-4920• “A Place for Us” group, Please call for details, Leslie 828-772-4920, Marci 828-298-1727Carteret County• Last Monday, 6:00 pm, Golden Corral, Morehead City, Kathryn 252-241-4719 Chatham County• *NEW GROUP* 4th Tuesday, Chatham Community Library, Pittsboro, Please call or email for time and details, Eileen 919-535-4135 or [email protected] County• 1st Tuesday, 6:30 pm, Dover Foundation YMCA, Shelby, Kristen 704-481-9628Cumberland County• Fayetteville Group, 3rd Saturday, 12:00-2:00 pm, Please call for location, Fayetteville, Paulette 910-487-3093, Jackie 910-303-8665 Davie County• 2nd Monday, 6:00 pm, Davie Medical Center Bermuda Run exit Plaza 1, Cardiac Rehabilitation and Physical Therapy Classroom (1st floor), Jackie 336-909-5877Durham County• Durham Evening Group, 3rd Thursday (except July/Aug) 6:00 pm, John F. Kennedy Towers Community Room, Durham, Lisa 919-308-8889Edgecombe/Nash Counties• “Multiple Smiles” Group, 2nd Friday, 11:00 am, Please call for location, Rocky Mount, Kat 252-972-2232

Elkin/Tri-County• Sharing the Journey Group, 1st Monday, 10:00 am, PruittHealth, Deb 336-835-8419Forsyth County•Kernersville, Newly Diagnosed and Minimally Affected, 4th Wednesday, 6:15 pm, Main Street United Methodist Church (parlor), Sherri 336-992-2134, Matt 336-750-0732• Tabor Cares Group, 1st Thursday, 7:00 pm, Mt. Tabor United Methodist Church, Winston-Salem, Marianne 336-765-4361 • You, Me and the Lord, too!, 2nd and 4th Tuesday, 10:00 am, Cornerstone Baptist Church, Winston-Salem, Dolores 336-784-8460Granville/Vance Counties• 3rd Tuesday, 7:00 pm, Granville Medical Center cafeteria, Sarah 919-693-1621, Audrey 919-693-4439, Helen 252-433-5181Guilford County• Greensboro, Aquatics Exercise Group, M-W-F 11:00 am, Spears YMCA, Wyn 336-852-2182• Greensboro Men’s Group, Every Wednesday, 8:30 am, St Francis Episcopal Church, St. Mike’s House, John 336-545-0100• High Point/Jamestown, But You Look So Good, 2nd Saturday 11:00 am, Poblanos Mexican Restaurant, Lisa 336-454-6785Henderson County• Social Group, 3rdThursday, 9:30 am, Denny’s Restaurant, Hendersonville, Cathy 828-693-8172Hoke County• 1st Sunday, 4:00 pm, Something’s Brewing Coffee Shop, Raeford, Heather 910-850-6803Johnston County• Clayton Group, 3rd Tuesday, 11:00 am, Church at Clayton Crossings, Clayton, Janet 919-553-5727, Lori 919-669-7406Lee County• Sanford Group, 2nd Monday, 6:30 pm, Enrichment Center, Sanford, Rosemary 919-499-4230Mecklenburg County• Christian-Oriented Group, 4th Wednesday, 11:30 am, Church at Charlotte, Charlotte, Barbara 704-542-6012• Minimally Impaired/Newly Diagnosed, 2nd Thursday,

SELF-HELP GROUPS:


7:00 p.m., Myers Park Presbyterian Church, Outreach Center, Charlotte, Becky & Lester 704-366-3536, Rick 704-541-2138Moore County• Moore County Group, Meets at various locations, Please call for details, Aberdeen, Dell 910-944-2567New Hanover County• Wilmington Group, 2nd Thursday, 7:00 pm, New Hanover Regional Medical Center Rehabilitation Hospital, Wilmington, Burt 910-383-1368, Lisa 910-399-7252Onslow County• Jacksonville Group, 3rd Thursday, 7:00 - 9:00 pm, Onslow Memorial Hospital Education Building, Margaretta 910-353-2243Orange County• Chapel Hill Group, Last Tuesday, 6:30 pm, Seymour Senior Center, 2551 Homestead Road, Chapel Hill Barbara 919-968-1530, Alex 919-572-6336Person County• Roxboro Group, 2nd Tuesday, 7:00 pm, Senior Center 121 Depot St., Sherry 336-599-0014, Robert 919-641-8073Pitt/Greene Counties• 2nd Thursday (except July/August), 6:30 p.m, Elm Grove Church, Ayden, Jimmy 252-524-5431, Jane 252-653-4185 Rowan County• 2nd Monday, 6:30 pm, YMCA Jake Alexander Blvd, Salisbury, Christine 704-798-3341, Jill 704-798-5088, Tonda 704-636-9405 Scotland County• 2nd Thursday, 5:30 pm, Dulin Center at Scotland Memorial Hospital Community Health and Rehab Center, Laurinburg, Juanita 910-291-7327Wake County• Cary Group, 2nd Thursday, 12:00 pm, Rex Wellness Center, Cary, Mary Ann 919-779-2101, Russell 919-387-8549, Trish 919-618-6956• Cary Singles Group, Please call for details, West Regional Library, Cary, Tina -908-612-5957• Fuquay-Varina Group, 2nd Thursday, 7:00 pm, Gathering Community Church, Fuquay Varina, Mary 919-552-7680• Raleigh Evening Group, 3rd Wednesday, 6:30 pm, Please call for location, Holly 919-779-3487, Cherry 919-720-4843

*No Meetings in July or August• Raleigh Wellness “Making Waves”, 1st Wednesday, 1:00 pm, Please call for location, Kim 919-832-2651• Raleigh Women’s Group, 3rd Tuesday, 6:30 pm, Total Wine (North Hills), Jackie, Kathy, Sherrie 919-389-9635 or [email protected]• Triangle African American Group, Please call for details, Robbin 919-255-8210, JuJuan 919-604-1194 Kenyan 919-772-9222, Dannyell 919-675-1710 Wayne County• Goldsboro Group, 2nd Tuesday, 7:00 pm, I-HOP, 1100 N Berkeley Blvd, Goldsboro, Maxine 919-242-9641, Glen 919-965-6452Wilkes County• Wilkesboro 2nd Thursday, 6:00 pm, Woodhaven Restaurant, (except December/January/February) Wanda 336-667-1889, Kent 336-903-1539

SOUTH CAROLINA SELF-HELP GROUPSAiken County• 3rd Saturday, 10:00 am, St. Paul Lutheran Church Aiken, Pam 803-645-2092 Beaufort County, SC• MS Low Country Group, 4th Friday, 10:00 am – 12:00 pm, Bluffton Medical Campus, Bluffton, Betty 843-757-4402Charleston County• Charleston Group, 3rd Sunday, 3:00 pm, Bon Secours St. Francis Hospital, 5th Conference Room, Debbie 843-532-9513• Mt. Pleasant Group, 2nd Saturday, 10:30 am -12:00 pm, East Cooper Community Outreach, Mt. Pleasant Chris 843-884-6681, Becki 843-856-8391, Jed 843-856-8563• North Charleston Area Group, 2nd Tuesday, 11:00 am, The Senior House, North Charleston, Sharon 843-640-1507 Dorchester County• Summerville (includes care partners), 3rd Friday, 11:00 am, Bethany United Methodist Church Summerville, Elizabeth 843-873-0818, Valerie 843-376-9041 Florence County• 3rd Tuesday, 5:00 pm, Carolinas Rehabilitation Hospital, Community Classroom, Florence, Casey 843-661-3745, Keith 843-862-3931


Greenville County• But You Look So Good! Group, 1st Thursday, 6:30 pm, American Cancer Society, Greenville, Crissy 864-906-1019, Allie 864-275-4756Lexington County• 3rd Thursday (includes care partners), 1:00 pm, First Baptist Church of Lexington, Lexington, Michelle 803-520-0508, Joan 803-479-9594Orangeburg County• 2nd Saturday, 11:00 am, Bushy Pond Baptist Church 1396 Wire Rd, Norway, SC, Valery 803-759-5671, Katrina 803-308-5768• 1st Thursday, 6:00 pm, First Baptist Church-Family Life Center, Orangeburg, Suzanne 803-531-9707Richland County• Columbia Daytime Group (includes care partners) 3rdTuesday, 12:00 - 2:00 pm, Trenholm Road United Methodist Church, Columbia, Tim 803-348-0833, Darlene 803-272-0216• Columbia Afternoon Group (includes care partners) 4thMonday, 2-4 pm, St. Michaels’ and All Angels Episcopal Church, Columbia, Bob 803-736-3174, Sandy 803-736-5073• “Let’s Talk About MS” Columbia North East Group 4th Monday, 6:30 pm, Providence Hospital NE, Columbia, Ranva 803-316-3653, LaRhonda 803-727-4962Spartanburg County• 3rd Monday, 5:30 pm, Mary Black Memorial Hospital Private dining room, Spartanburg, Robin 864-706-2693, Rhonda 864-590-4703, Sharon 864-706-2519

FOR MORE INFORMATION ON JOINING A SELF-HELP GROUP:

For more information on joining a self-help group or starting one in your area, please call 1-800 FIGHT MS or visit us on the web at www.nationalMSsociety.org/greatercarolinas and click on Find Resources and Support, then Social and Emotional Support, then Support and Self Help Groups.

Self Help Group Super Stars We would like to give a special shout-out and thank-you to two of our amazing self-help group leaders, Robin Newsom and Leslie Newman.

Robin and Leslie both served as Community Walk MS managers in 2015, helping to raise funds and awareness through Walk MS. Thank you Robin and Leslie for your leadership in Spartanburg, SC and Western NC!


VOLUNTEERS

VOLUNTEERSPOWERING THE MS MOVEMENT At 43 years old, pressing forward through the prime of his life and career, Al Colvin realized that something about his health just wasn’t right. In 2010 he was working for a Fortune 500 company, running marathons and raising two teen-aged daughters. The first symptoms he noted were loss of mental focus, fatigue, pain and impaired vision. Doctors couldn’t explain the reasons for the symptoms that would come and disappear quickly. Two years after the onset of symptoms, an MRI of his brain and spinal cord confirmed that he had multiple sclerosis.

Al knew nothing about the disease, so he began to read everything he could on the subject. His research led him to discover a clinical trial for a new FDA approved MS medication, which he currently takes. He also connected with the Society, where he has become an active part of the MS Movement. In 2014 Al, along with his family and friends, worked to raise money and volunteered to support the movement at Walk MS in Wilmington, NC. That fall, he and his daughter also volunteered at Bike MS: Breakaway to the Beach at Sunset Beach, NC. There they met other volunteers and learned about the Society’s Advocacy efforts. As a result,

Al has become highly involved with Advocacy and works to raise awareness about MS as a Talk MS Speaker. In fact, he recently attended the Society’s 2015 Public Policy Conference in Washington, DC, where he shared his story and encouraged legislators to support society priorities. At every opportunity, Al and his family draw from their skills and connections to help others with MS to live their best lives.

When asked why he chose to become involved, Al said, “This disease has the ability to rob so much from so many people unexpectedly. I feel as though I have to do all I can for the MS movement. Increasing awareness and raising funds for local programs and research is now my top priority. I look forward to the day when we can celebrate the cure for MS!” There are many other ways to get involved. Register as a volunteer now and we will help you find the best way for you to invest your time and talents.

Complete a volunteer registration form on the volunteer page at www.nationalMSsociety.org/nct or email [email protected].

MS CONNECTION: SPRING 201514ADVOCACY

The story that depicts your personal journey with multiple sclerosis has the potential to become your most powerful advocacy tool. But how do you harness years, or even decades, of activity in a matter of minutes? To help MS activists best use their personal story, the National MS Society partnered with the Congressional Management Foundation and introduced a new story telling session at the 2015 Public Policy Conference held in Washington, D.C. March 9-11.

More than 325 MS Activists completed the process, step-by-step, to craft a personal story that translates the impact of the Society’s federal policy priorities -- MS research funding, collection of neurological conditions data and access to rehabilitation technology -- has on their lives. “The process is extremely easy to follow as long as you remember that you’re telling your personal story. Be honest, graphic and truthful,” said Columbia, South Carolina MS activist, Robert Taylor who developed and shared his story at the Conference and on Capitol Hill. To read Roberts example, please visit: http://ntl.ms/7stepstory.

Your story too, may impact the Society’s work

at the federal and local level. Take some time to reflect on your personal journey with MS. Through the following steps (not all sections need to be completed, but it is critical for to stop at each section, ask the key questions, and determine if the element can assist you in the pursuit of your policy goals):

• Step 1: “The Want” – Beginning with the end in mind• Step 2: “The Opening” – Set the state and establish the stakes• Step 3: “Paint the Picture” – Details and the senses• Step 4: “The Struggle” – Describe the challenge(s)• Step 5: “Discovery” – Provide interesting and impactful facts• Step 6: “We Can Win!” – Introduce the potential of success and joy• Step 7: “The Button” – Finish with the request

Visit http://ntl.ms/7stepstory and review the worksheet with a state or federal policy priority in mind.

Robert and Chong Taylor

NATIONALMSSOCIETY.ORG | 1-800-344-4867 15LOCAL RESEARCH

DUKE UNIVERSITY MEDICAL CENTERRECEIVES $1.1 MILLION IN MS RESEARCH FUNDINGThe National Multiple Sclerosis Society has committed $28 million to support an expected 84 new MS research projects and training awards. These are part of a comprehensive research strategy aimed at stopping MS, restoring function that has been lost, and ending the disease forever – for every single person with MS. More than $1.1 million of these funds are allocated for scientists at Duke University Medical Center.

The Society will fund new projects to two scientists at Duke University Medical Center.

Dr. Maria Ciofani of Duke Univeristy Medical Center received a grant of $629,860 to identify genes that are expressed in certain types of cells and that may contribute to causing MS.

Dr. Nancie MacIver of Duke University Medical Center received a grant of $473,018 to explore whether a nutrition-regulated hormone called leptin may contribute to immune-system activity in MS.

“Without the support of the National MS Society, we would not be able to pursue these critical leads,” said Dr. Maria Ciofani, Society grantee and lead investigator of the genetic mediators project.

“We are grateful for the Society’s support and look forward to making significant strides for the MS community and all impacted by this disease,” said Dr. Nancie MacIver, Society grantee and lead investigator of the leptin project.none


BIKE MS STREET TEAMS - WE NEED YOU!If you’ve ever said “let me know what I can do to help”, then this is for you! And, you don’t have to be a cyclist to be a super-recruiter!

We’re looking for volunteers, cyclists, family and friends to help create buzz and increase rider participation by serving as part of the Bike MS Street Team. This group

will further the mission of the National MS Society and contribute to the success of Bike MS. Don’t worry! We’ll train you and give you all the tools to have fun and raise awareness!

Ways the Street Team Promotes Bike MS » Attend local rides and other events and

promote Bike MS to participants. » Distribute flyers, posters, and brochures,

around town, at your place of business, place of worship, gym, club, local restaurant, at local races or other events, etc. » Be prepared to answer general questions

about Bike MS.

Street Team PerksThe National MS Society hopes that members of this special group will find their role a rewarding and worthwhile experience.

» Apparel – Street Team Members will receive Bike MS apparel to identify them to

other cyclists. » Materials – Street Team Members

will be given supplies needed to set up and affectively promote Bike MS. » Training – The National MS Society will

provide training to Street Team members, so they will know the proper messaging about Bike MS. » VIP Pass at Bike MS – Street Team

members will get a VIP pass at Bike MS!

ResponsibilitiesSpecific instructions and assignments will be distributed before each assignment. Instructions will include where to report, and what materials will be needed.

» Ride Assignments – A list of rides with the most recruiting potential has been identified, and will be split up among the Street Team members. If other rides come up that Street Team members see as a benefit, they can be added to the list. Street Team members who are on a Bike MS team can promote their own team, but must be able to talk about Bike MS, and all of its options. » Collateral Distribution – A list of

targeted locations has been created, and will be divided among Street Team members. » Dependability – Street Team members

should arrive at the appointed location on time, and with all needed supplies. They should also coordinate with the MS office to make sure they have all of the supplies.

Does this sound like you? Contact us for more information on how you can join our 2015 Bike MS Street Team! Contact [email protected] or call (336) 645-3315.

DEVELOPMENT


BIOGEN PARTNERS WITH BIKE MS ON LINKING LIVESThe National MS Society, Greater Carolinas Chapter is thrilled to announce a new partnership with Biogen on our Bike MS Linking Lives Program. Thanks to the support of Biogen, the Linking Lives program will be offered in all three of our Chapter’s Bike MS Events.

“This program is a great opportunity for Bike MS participants to not only get to know someone with MS and learn some about what it means to have MS. The partnerships that develop put a face on disease and allow the rider to experience why these events are so important to the MS community. Biogen is proud to support this program and make it more widely available to more riders and people with MS.” – Dave Williamson, Biogen Bike MS Team Captain

The program is designed to connect those living with MS with participating cyclists to provide mutual support and encouragement of their respective challenges.

If you or someone you know is interested in participating, please contact [email protected].


Bash MS and Golf TournamentIndividuals and group from across our Chapter area are joining the movement by using their talents and interests to raise awareness and funds for the National MS Society! There are endless ways to get involved. Host a fundraising event, start a grassroots fundraising campaign with email or take on a personal challenge of your choice!

This June, a group of passionate individuals are combining their energies, resources and talents to host the 2nd Annual Fighting & Understanding MS Event in Greenville, SC on June 7-8, 2015. Last year’s event raise over $71,000 to help create a world free of MS. For more information on this event, contact Monica at [email protected].

Want to learn more about how you can create your own event? Contact Beth Nolen at [email protected] or at 704-612-2702.

www.DOITYOURSELFMS.org


Bike MS 2015

Historic New Bern RideSEPTEMBER 12 - 13

Tour to Tanglewood

SEPTEMBER 19 - 20

Breakaway to the Beach

OCTOBER 17 - 18

REGISTRATIONIS NOW OPEN

30th Anniversary

30th Anniversary

bike tocreate a worldfree of MS

www.bikeMScarolinas.org

Join the Greater Carolinas for one of our 3 Bike MS Events!

Did you know Bike MS is the 5th largest event of its kind in the nation? Whether you enjoy cycling or supporting those moving us closer to a cure, there is a place for you at Bike MS.

Bike MS is a two day event where thousands come together to pedal us closer to a world free of MS.

Not a cyclist? Volunteer! Be a part of supporting and celebrating our cyclists by working a fully supported rest stop, being a friendly face serving breakfast, or an enthusiastic cheerer at the finish line. Don’t miss your chance to be a part of such and exciting event!

Sign up to ride or volunteer today: bikeMScarolinas.org

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Raleigh NC Permit #564

Greater Carolinas Chapter3101 Industrial Dr. Ste. 210Raleigh, NC 27609

SAVE THE DATE

August 29, 2015: Wells Fargo Atrium, Charlotte, NC Relive the glamour & fun of the Roaring ‘20’s with an evening of live entertainment, swing dancing, heavy hors d’oeuvres & desserts from celebrated Charlotte restaurants, complimentary wine and beer and so much more…..

PROHIBITION COMES TO GATSBY IN 2015! Guests with VIP tickets will have access to our Prohibition Room, where they will enjoy a pre-event reception with tasty appetizers and Signature Prohibition cocktails. The room will be available throughout the evening with its own bar, and to top things off guests will receive a Gatsby style gift upon departure!

Tickets available online at www.gatsbygala.org late April 2015. For more information please call 704.731-1433.

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LIVING WITH MS MANAGING MS CHALLENGES · PDF filewellness research, including diet, ... including a phase 2 trial of ibudilast in ... a specific type of memory training improves