Issue 3 2015 The National Multiple Sclerosis Society

Alabama-Mississippi Chapter

www.nationalMSsociety.org/ALC • (800) 344 -4867

MS CONNECTION

During the summer of 2003, Jim and Betsy Harmon were looking for a new way to raise funds to help in the fight against multiple sclerosis. Their family set up a lemonade

stand and donated the proceeds to the National MS Society. The idea caught on quickly, and the next year saw Stands being set up throughout the Birmingham area, raising funds and awareness.

The Stand Against MS has since become a summertime tradition for families, civic groups and businesses looking for a fun way

to make a difference in their communities. Volunteers give away lemonade provided by Buffalo Rock and cookies provided by Bud’s Best Cookies in exchange for donations to the Alabama-Mississippi Chapter. The Chapter provides all the marketing materials necessary including yard signs, T-shirts and banners to hang at the Stand.

To setup a Stand in your area, contact the Chapter at 205-879-8546 or 601-856-5831.

STANDAgainst MS

In the Spotlight 2

Scholarships 3

Bike MS 8

MSResearch 42015 Leadership Class 5

Client Programs Near You 6

Who’s Who 7Evening of Wines 7

IN THIS ISSUE

2014 BOARD OF TRUSTEESHafiz Chandiwala, Chairman

Coca-Cola Bottling Company UnitedFrank D. McPhillips, Immediate Past Chair

Maynard, Cooper & Gale, PCGeorge M. Trible, IV, Vice Chairman

Wells FargoShannon Clemons, Secretary

Bentley Systems, Inc.Lynn Lovelady, Treasurer

Energen Corporation

Khurram Bashir, MD, UAB John Bentley, Renasant BankTerry Brown, HealthSouth

Meredith Calhoun, Corporate Realty Associates

Trey Clegg, Brasfield & GorrieScott Crawford, PhD, Disability Rights

AdvocateTara DeSilva, PhD, UAB

John Dukes, Helmsing Leach Herlong Newman & Rouse, PC

Edmond E. Hughes, Ingalls ShipbuildingInge Johnstone, Johnstone Carroll, LLC

Doug Jones, EntergyDebbie King, MTS

Todd Lankford, Robins & MortonChristopher Leech, Regions Financial Corp.

Charles Long, IV, RetiredPaul McNeill, Merrill LynchJ. Marshall Morrissette, III, BlueCross BlueShield of ALStacie Propst, PhD, GASP

Steve Reed, Go To Market SolutionsEmily Sherrill Riser, MD, Tanner Center

for MSThomas Rockwell, Rockwell & Kaufman, LLC

Dave Smith, Regions Financial Corp.Craig Snell, Carr, Riggs & Ingram

Mark Tarr, HealthSouthJay Watkins, Jones Walker, LLP

Lee Weathers, RetiredMitch White, Diamond Gasoline Stations

Pat Wiley, Mississippi Power

The Alabama-Mississippi Chapter welcomes new Self-Help Group leader, Debbie Johnson.

Debbie held her first meeting at Athens-Limestone Hospital in Athens, Ala. on Tuesday, June 2.

She said she knew she wanted to start an Athens Self-Help Group after volunteering at the Bike MS: North Alabama event last year. She had only been involved with the Chapter for several months at that time; however, she loved doing something she had a passion for and wanted to continue.

“I felt like I could make a difference,” said Debbie. “I live with MS, and talking with people often gives me the encouragement that I need. I want to be able to provide that for others, too.”

Debbie was diagnosed with MS in 2002 after experiencing a mini stroke. Afterwards, she claimed she drew back from social settings and didn’t have a lot of confidence. Support from her husband and family made the difference, and when she started volunteering with the Society, Debbie knew she could help others the same way.

With the encouragement from Society staff mem-bers, Debbie started Self-Help Group training last summer. “I got excited when I started going through training. It was thoroughly detailed and helped me prepare to lead with confidence.”

During the middle of Debbie’s training, she went through a relapse with her MS. She had to stop for a while, but she was dedicated to bringing this sup-port group to her area.

“I started the training over. The staff was very supportive, and I got a lot of encouragement from what I was learning,” she said.

Debbie’s Self-Help Group meets the first Tuesday of every month. She estimates 12 people attended the first meeting, and she expects continuous growth over the coming months.

SPOTLIGHT ONDEBBIE JOHNSON

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CHAPTER AWARDS 33 SCHOLARSHIPS TO STUDENTS AFFECTED BY MSThe Alabama-Mississippi Chapter awarded a record breaking 33 scholarships to students across Alabama and Mississippi for the 2015-2016 academic year.

“Thanks to Wells Fargo and our constituents’ fundraising efforts, our Chapter has been able to award more scholarships this year than ever before,” said Andrew Bell, President of the Alabama-Mississippi Chapter.

The National MS Society’s scholarship program has been helping students affected by MS pursuing a post-secondary education nationwide since 2003.

This year, the program expanded to include not only first time college students, but also anyone who has MS or has a parent with MS that will be attending an accredited college or technical school.

“With annual costs estimated at $70,000 per household, MS is one of the most expensive

illnesses in the country,” said Bell. “We hope this can provide some relief to families who need it.”

Scholarship applications for the 2016-2017 academic year will be available Oct. 1.

Among this year’s recipients are: (shown left to right, below) Mackenzie Andrews, Carlyn Brewer, Caleb Cutts, Jasmein Davis, Jasmine Edmond, William Eiland, Andrew Garcia, Devan Griffith, Laken Hayes, Lauren Haynes, Giulia Hintz, Carly James, Sarah Johnson, Kaitlyn Kulakowski, Kelsey Lemire, Laura Lewis, Abbey Muzio, Zane Phillips, Matthew Powers, Michael Pursley, Mckenzie Rozek, Sydney Savage, Gabrielle Shaw, Gabriela Snell, John Solberg, Kinsey Stanley, and Quontina Thompson.

Not pictured: Kameron Cass and Sarah Hyde.

CLASS OF

2015

TOLL FREE NUMBER 1-800-344-4867 | 4

MULTIPLE SCLEROSISAND GENETICSEpidemiological studies have shown that if a family member has MS, other members of the family are two to three times more likely to have MS. If the lifetime risk of MS increases with familial association, should MS be considered a genetic disease?

To answer this question, we should first understand what constitutes a genetic disease. A genetic disease is an abnormality in an individual’s DNA sequence, which is responsible for that individual’s genetic makeup. An individual’s genetic makeup is comprised of 23 pairs of chromosomes; these chromosomes consist of very long strands of DNA that encode many genes. A genetic disease can result from a mutation in a single base in the DNA of a single gene to a gross chromosome abnormality.

Some genetic disorders are inherited, while other genetic diseases are spontaneously acquired. An important example of an inherited genetic disease is sickle cell anemia. Sickle cell anemia results from a mutation of a single nucleotide in the DNA sequence of chromosome 11. An individual who inherits the defective gene from both parents will develop the disease with a correlation of 100%. Individuals who receive one defective and one normal gene remain healthy but can pass on the disease to their offspring.

Genetic studies have not revealed any specific mutations that are consistent among MS patients. However, variations in the genes responsible for the major histocompatibility complex have been found within families who have a high risk for MS. The major histocompatibility complex is responsible for the activation of T cells, which is thought to be an important initiating event in MS. Individuals who express these genetic variations may or may not develop MS, suggesting that environment is also an important factor contributing to MS. This makes the etiology of MS very complex, but it does demonstrate a role for genetic susceptibility in MS.

Goodin, DS. The genetic basis of multiple sclerosis: a model for MS susceptibility. BMC Neurology, 2010.10:101.

International Multiple Sclerosis Genetics Consortium. Genetic risk and a primary role for cell-mediated immune mechanisms in multiple sclerosis. Nature. 2011:10;476(7359):214-9.

RESEARCH UPDATENOWAn MS Research Revolution

by Dr. Tara DeSilva, neuroscientist in the Department of Physical Medicine and

Rehabilitation, and the Center for Glial Biology and Medicine at UAB

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The Alabama-Mississippi Chapter Team took Challenge Walk MS: Savannah by storm with 12 Walkers, 5 Super Crew Volunteers, 4 Crew Volunteers and 1 Virtual Walker. Thanks to each individual’s efforts, the team raised $26,300 to help create a world free of multiple sclerosis.

“I loved being a part of Challenge Walk,” said first-time participant Karen Garber. “The fundraising was a bit intimidating at first, but I was determined that I would raise the required $1,500. Physically, Challenge Walk was very demanding as we had to walk 21 miles the first day. But I met many wonderful people from all over the Southeast. That made each step a little easier - as we walked and talked, I was able to hear each person’s story or connection to MS.” Challenge Walkers: Rob and Stephanie Steingruber, Lori Martin, Charley Long, Dr. Scott Crawford, Dr. Agnes Cartner, Lockett Nelson, Rashon Vice, Margaret Cartner, Meridith Bottchen, Karen Garber and Melissa Richard.

Super Crew Volunteers: Madison Steingruber, Jane Henry, Diane Sausen, Pat Sparkman and Larry Sparkman; Crew Volunteers: Dr. Samuel Cartner, Sam Cartner, Kenneth Vice and Andrew Cartner; Virtual Walker: Nicole Benavides. If you would like to accept the Challenge, please save the date for Challenge Walk MS: Savannah 2016 Feb. 26-28.

ALABAMA-MISSISSIPPI CHAPTER TEAM ACCEPTS THE CHALLENGE 3 DAYS. 50 MILES.

Alabama’s oldest charity wine auction, the Society’s Evening of Wines celebrated its 30th Anniversary April 26 at the Country Club of Birmingham, raising $231,000 to support the National MS Society.

“We could not be more pleased with the long-term success of Evening of Wines,” said Andrew Bell, Chapter President. “A special thanks to our Committee members, attendees, and sponsors for making the 30th Anniversary celebration another record-breaking year. The funds raised through the event will go a long way in supporting new MS research and programs for people living with MS and those that care about them.”

COMING TO A COMMUNITY NEAR YOUCLIENT EDUCATION PROGRAMS

TOLL FREE NUMBER 1-800-344-4867 | 6

Mood and Cognition in MS: Learn why and how people with MS experience changes in mood and cognitive functioning, and the latest information on how these symptoms can be ad-dressed — from physical activity, medications and counseling to self-management strategies.

• Athens, Ala. – Tuesday, July 7 – 6 PM (Athens Hospital )• Oneonta, Ala. – Thursday, July 9 – 6 PM (St. Vincent’s Blount) • Birmingham, Ala. – Monday, July 13- 6 PM (Lakeshore Foundation - this program

will include a tour of the Lakeshore Foundation and an informational session about the BLADES research study)

Couples’ Retreat: Learn how to tackle MS as a team while enjoying a relaxing retreat on Lake Tiak-O’Khata.

• Louisville, Miss. – Friday and Saturday, Aug. 28-29

Gender Differences in MS: Men and women are affected by MS differently – join Dr. Barbara Giesser and Dr. Rhonda Voskuhl of UCLA to learn why and how those differences are important. Participate in this teleconference series on either date that is convenient for you.

• Teleconference - Tuesday, July 21, 6 PM or Thursday, July 23, 9 PM

Preparing for MS Doctor’s Visits: Learn tips to prepare for successful visits with your doctor. Kathy Costello, MSCN, Associate Vice President of Clinical Care, National MS Soci-ety, shares ideas on how to build a true partnership with your provider. Participate in this telecon-ference series on either date that is convenient for you.

• Teleconference - Tuesday, Sept. 15, 6 PM or Thursday, Sept. 17, 9 PM For more information about a program, please contact Aquilla Stanback at aquilla.stan-back@nmss.org or call 1-800-344-4867.

30TH ANNUAL EVENING OF WINES

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COMING TO A COMMUNITY NEAR YOULOOK WHO’S JOINED THE MOVEMENT

Edmond HughesEdmond Hughes, Vice President of Human Resources and Administration at Ingalls Shipbuilding in Pascagoula, Miss., joined the MS Movement after he

started working for Ingalls. Multiple sclerosis had affected his life since his father was diagnosed when Edmond was young. He was encouraged to get involved with the Society after learning that some of his coworkers live with MS like his father did. Three years ago, Edmond joined the Board of Trustees for the Alabama-Mississippi Chapter. He also chaired the 2013 and 2014 Walk MS: Ocean Springs events, which collectively raised more than $50,000.

“Tremendous progress has been made since my father lived with this disease years ago,” he said. “There is a significant difference in the medicines and help that people can receive now, and a large part of that is thanks to The National MS Society.” Madelyn RaineyAt just 12 years old, Huntsville native, Madelyn Rainey is already making an impact in the MS

Movement. Madelyn’s mother, Kristine, lives with MS, and Madelyn began attending the Chapter’s annual Kid’s Camp in 2010. She has returned every year since.

“Kid’s Camp is a great opportunity for kids to learn about their family member’s disease, and we have a lot of fun, too,” she said. “This is my last year to go, so I will really miss it.”

Madelyn also volunteers at Bike MS: Tour de Beach. Last year she and her mom cycled 90 miles at the two-day Bike event. She admitted that was not easy, but knowing it was raising money and awareness for multiple sclerosis kept her going.“I hope more people will contribute to Bike MS as the years go on, and that one day we won’t need to do it anymore because there will be a cure.”

Nancy JohnsonNancy Johnson from Madison, Miss. has been involved with the Alabama-Mississippi Chapter since she was diagnosed with multiple sclerosis in 1998. She was a secondary English teacher

for the public school system in Greenville, Miss. at the time of her diagnosis. After retiring in 2010 and moving to Madison, Nancy expanded her participation with Society. She volunteers with the Chapter’s Jackson office, helping with activities like answering phones and decorating the bulletin board.

Nancy is also a member of the Self Help Group in Madison. She says that the National MS Society has been a way for her to stay connected to others going through the same thing and to stay encouraged throughout her journey living with MS.

“Being involved with the Society gives me an outlet to use the skills I have,” She said. “I can still enjoy life.”

Burt ChandlerBurt Chandler, Director of Operations at Iberia Bank in Birmingham, Ala. has participated in Bike MS since 2008 and serves on the Greater Birmingham Community Board. He began

participating in Tour de Beach in 2012 and is the team captain of The Iberia Bank Cycling Team, Tour de Beach’s largest team. His team consists of more than 40 Iberia employees as well as their family members, customers, and vendors.

Burt has a personal connection to MS through his aunt as well as friends and even several coworkers.

“I love the fact that The National MS Society has a bike ride,” said Burt. “It encourages fitness and biking, and the people there show incredible determination.”

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