SPRING 2015

MS CONNECTION NEWSLETTER

Each March, the National Multiple Sclerosis Society celebrates MS Awareness Week- held this year on March 2–8. This annual event provides opportunities for people across the country to unite, raise awareness, and find new ways to help people with MS live their best lives. MS Awareness Week is a special week to recognize progress and to inspire others to join the Society’s vision of a world free of MS.

“People impacted by MS are connecting across North Florida and the nation starting this week to combine their efforts, knowledge and hope to do something about MS now,” said Corrina Steiger Madrid, North Florida Chapter President. “We are so thrilled that our volunteer leaders and community partners are holding local events to celebrate.” This year events such as silent auctions, advocacy meet-

and-greets, tourist trolley tours and newly diagnosed workshops are building awareness and connecting the MS community.

This MS Awareness Week and beyond, find the power of connection and learn about ways to build awareness and make a difference throughout the year. Just some of the opportunities you will find are:

• Connect –Through Self Help Groups, and online, connect to the MS Community around you. Share your story and connect with others at www.MSconnection.org. You can learn more about MS, upload your own photo and connection to share with others, download tools to spread MS awareness, or register to participate in an event near you.

• Become an MS Activist - Each of us has a story that can raise awareness about MS and the needs of people affected by MS to educate public officials and drive change.

• Stay Informed – Through programs such as “Knowledge is Power”, Webcasts and Telelearning events, there are many opportunities to stay informed from the comfort of your home.

• Join an Event – Opportunities such as Walk MS and Bike MS allow you connect to your community, increase awareness and fundraise to help support MS programs, services and research.

For more information call 1-800-344-4867 or visit nationalmssociety.org.

MAKE CONNECTIONS DURING MS AWARENESS WEEK

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The National MS Society is proud to be a source of

information about MS. The content is based on

professional advice, review of independent research,

published experience and expert opinion. The National

MS Society makes no warranties regarding the

information provided and the information is provided

for your educational purposes only. Any provided medical information is of a general nature and should not be

substituted for the individual therapeutic recommendation

or prescription by a medical person. For specific

information and advice relating to your personal

medical condition, always consult your personal

physician.

Early and ongoing treatment with an FDA-approved

therapy can make a difference for people with multiple

sclerosis. Learn about your options by talking to your

healthcare professional and contacting the National MS

Society at nationalMSsociety.org or 800-344-4867.

CORRINA MADRID

RESEARCH

UNDERSTANDING MS GENETICS RESEARCHBY CLAUDE SCHOFIELD, PHD

People affected by multiple sclerosis sometimes ask me: “It’s great that they found another gene that is linked to MS, but what does it mean for me?” Well, the genetics research presented at the annual meeting of the Americas and European Committees for Treatment and Research in MS (ACTRIMS-ECTRIMS), held in Boston this past September, has given me great answers.

HOW GENES INTERACTDr. David Hafler (Yale University) launched the discussion about genes and MS when he delivered the keynote lecture during the opening ceremony. He was the founder, with other researchers, of the International MS Genetics Consortium, a team that has turned MS genetics on its ear. “Virtually every MS geneticist on earth is working together,” he declared and spoke eloquently about where we are in the search for MS genes. He noted that there will likely be hundreds of MS risk genes uncovered eventually. “Each [gene] by itself has a small effect on disease risk; but each interacts with the environment,” he noted. “These are not

bad genes, and it’s not a bad environment – it’s a bad interaction.”

MAPPING MS SUSCEPTIBILITYDr. Philip De Jager (Harvard), recipient of the 2014 Barancik Prize for Innovation in Research, presented the Consortium’s latest findings – a replication of its pivotal genetics study, published in Nature Genetics (online, September 29, 2013), that identified 48 new genetic variants associated with MS based on data gathered from 30,000 people with MS and more than 50,000 controls without MS. Gene research is grueling – data from thousands of people with and without MS need to be gathered in massive numbers, and then all those data must be replicated. Dr. De Jager announced that after studies involving over 80,000 people, they now have identified more than 159 genetic variations related to MS, and more importantly, have begun to identify the specific immune cells and proteins involved, and how much weight each one carries. “We have

LETTER FROM THE PRESIDENTFriends,

The National MS Society is united in our collective power to do something about MS now and end this disease forever. Our Mission: People affected by MS can live their best lives as we stop MS in its tracks, restore what has been lost and end MS forever. Our vision is a world free of MS.

Everyone who wants to do something about MS can fuel progress. Events like Walk MS, Challenge Walk MS, Bike MS, and the On the Move Luncheons are fun and exciting ways to fundraise with friends, family and co-workers. Feeling creative? Check out our “Do It Yourself” event kit to personalize your fundraising efforts! Planning a gift as part of one’s overall estate and financial plans can help ensure that the Society’s mission continues for years to come, so make plans to join the Lawry Circle this year.

Each person with MS can live their best life with more connections to information, resources and others with shared experiences. Contact the Society to get connected to the people, programs, publications, and organizations for the most comprehensive and reliable resources available.

We invite you to share why you connect by creating your own connection image at MSConnection.org to include in our gallery and share with your network, then explore the gallery to learn about the connections that will help us end MS forever.

Together we are changing the world for people affected by MS. Make connections, share what you know, and become a part of your MS community.

Warmly,

Corrina Steiger Madrid President, North Florida Chapter National MS Society (904) 334-6889, corrina.madrid@nmss.org continued, page 06...

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SAVE THE DATES FOR THIS YEAR’S FAMILY PROGRAMSThe North Florida Chapter is looking forward to our upcoming events for the family. Strengthening relationships and building new friendships is extremely important for those with MS in their family. This is why, throughout the year, we provide opportunities for children, teens and families to connect. Family programs offer a time of support, relationship building and having fun. This year our three main family programs include Kids Camp, Teen Expression and Deliver the Dream.

Kids Camp is a fun weekend for kids ages 7-13 who have a parent or guardian living with MS. The event is held at Camp Immokalee in Keystone Heights, FL from May 15-17, 2015. Kids will have the opportunity to experience a weekend of making new friends

and participating in activities such as crafts, rock climbing and swimming. This year we will also be joined by Dr. Lisa Buckloh, a children’s psychologist from Nemours Children’s Clinic, Jacksonville. Dr. Buckloh will be providing an interactive and hands-on learning session about MS. Kids Camp gives children an opportunity to learn about MS while also connecting with other kids from Florida who understand their daily challenges and empower them to learn positive skills.

Teen Expression is a one day event offered to teenagers throughout Florida who have MS in their families. Teen Expression is for ages 13-17 and will take place on June 25, 2015 at SeaWorld Orlando. This is a great opportunity for teens to meet other teens from across Florida who may be facing similar challenges. Participants will enjoy team building activities and meeting new friends. Additionally they will share their experiences, support each other, gain leadership experience, and have fun at SeaWorld Orlando!

IN MEMORY OF...Steve Dickson Marian Dickson

Debbie Glaze George Emerson

Gloria Skinner Daniel Wright

Karen Guilmette Diane Howard-Conventry

Linda Ramp E Catalina Usina-Morse

Teri Ellen Loving Joan Loving

IN HONOR OF...Sasha Brooks Barbara Barrett

Carrie & Scott Cessna Corrina Madrid

Pam Romer Margie Weinstein

Pamela Shrestha Deborah LaGrasse

Deliver the Dream is a family retreat from November 13-15, 2015 at the FFA Leadership Training Center in Haines City, Florida. This event is specifically for families with a parent or child living with multiple sclerosis. Families attending this weekend will be involved in structured, therapeutic, family-centered activities that offer respite, relaxation, and recreation for those who are experiencing similar challenges. A Deliver the Dream retreat will give you and your family a new sense of self and enhanced coping skills. n

For more information or to register for any of the listed events, please call 1-800-344-4867 or e-mail Kinsey.Stewart@nmss.org.

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created a reference map of MS susceptibility,” said Dr. De Jager. “Now we turn to the task of understanding the biology of MS susceptibility.”

EXPLORING DIFFERENCESDr. Noriko Isobe (University of California, San Francisco) and the Consortium reported on how genes differ between African Americans and Caucasians with MS, following up on a 2013 study published in Neurology (online, June 14, 2013). Eight novel genes were identified among African Americans with MS that were not uncovered in the larger gene scans. We’ve seen that the experience of African Americans with MS is different from that of Caucasians, and this study is putting us on the road to finding out why.

GENES AND VITAMIN DDr. Jennifer Graves (University of California, San Francisco) and the Network of Pediatric MS Centers reported on findings from an ongoing study led by investigators nationwide of what triggers MS in children. They showed that vitamin D status, which has been linked to MS risk, was associated with MS relapses only if children have a specific immune gene. The original study included 185 kids, and this group is collecting data on hundreds more. Trials of vitamin D supplementation are ongoing, so I’m hopeful that future findings will show who may be helped most by this strategy.

TRANSLATING THE DATATaking a big step toward translating all of this gene data, Dr. Nikolaos Patsopoulos (Brigham and Women’s Hospital) and colleagues from a range of institutions in Boston examined which proteins interact with the 159 genes that have been pinpointed by the Consortium. Then they cross-linked this information with the “druggable genome” —a data set on how existing therapeutics interact with the genome—and identified more than 2,000 possible therapeutic interactions.

Genetics research is a huge part of our efforts to end MS forever because by understanding factors that may cause MS, we’re better able to target research of solutions to those specific factors. This meeting has given me a lot of hope that we are on the right path to doing just that. n

Dr. Claude Schofield is the director of Discovery Research at the National MS Society.

Originally published on www.MSconnection.org/blog.

To follow the latest MS research, visit www.nationalMSsociety.org/research, or sign up for MS eNEWS at www.nationalMSsociety.org/signup.

VOLUNTEERS NEEDED FOR WALK MS

The National Multiple Sclerosis Society, North Florida Chapter is hosting seven Walk MS events across North Florida in April and is in need of volunteers to support the event.

Walk MS is the rallying point of the MS Movement and relies on the help of numerous volunteers to step toward a world free of multiple sclerosis (MS). Walk MS participants and volunteers give hope to more than 3,500 people living with multiple sclerosis in North Florida. Dollars raised through Walk MS support life-changing programs and services for people affected by MS as well as cutting-edge research for a cure.

There are many areas that require volunteer support, including check-in for both volunteers and participants, rest stops, route support, cheerleaders at the start/finish, set up, hospitality, parking, tear down and more.

Groups and individuals of all ages and abilities are invited to volunteer. We are always looking for youth clubs, corporate, and service-oriented community groups to lend a hand before, during, and after our events.

Individuals interested in volunteering for the National MS Society can go to www.nationalmssociety.org/fln and visit our Volunteer page for more information on current volunteer opportunities. For questions or more information, please contact msnorfla@nmss.org.

April 11th - Walk MS: Ft. Walton Beach, Walk MS: Pensacola and Walk MS: Orange Park

April 18th – Walk MS: Gainesville, Walk MS: Tallahassee

April 25th – Walk MS: Jacksonville and Walk MS: St. Augustine n

UNDERSTANDING MS GENETICS RESEARCH

8940 Western Way, Suite 16Jacksonville, FL 32256 nationalMSsociety.org/FLN(904) 332-6810

ADDRESS SERVICE REQUESTED

This spring the volunteer spotlight shines on Jennifer Hendrix from Niceville, FL. Jennifer was diagnosed with MS in October 2011 and

immediately got connected with the National MS Society. Since then, she has been deeply involved in Walk MS in both Pensacola and Ft. Walton Beach as a team captain and top fundraiser. Jennifer has recently signed up to become a Self Help Group Leader for the Niceville, Ft. Walton Beach and Destin area.

When asked why she volunteers Jennifer remarked, “I volunteer because I am the type of person who needs to be a part of the solution. When I volunteer I know I am a small part of

helping find a cure for MS. And until we see the day of a cure I want to make sure I am doing everything I can to help others living with MS in any way I can.” Jen says that keeping active and volunteering helps her stay healthy and that when she thinks positive she feels better. “I just try to live each day to its fullest. I am always telling people that I count each day as a blessing, and I don’t plan on taking any of them for granted. I know how precious ‘good days’ are, so I make the most of them,” she said.

Jennifer lives in Niceville, Florida with her husband Jason where they enjoy spending as much time as possible at the beach. She and Jason love to travel to new places, especially where they can go hiking and explore the outdoors and whenever she gets the chance, she hits the road with her best friends to find a great concert. n

VOLUNTEER SPOTLIGHT

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