WINTER 2016 MS CONNECTION NEWSLETTER · MS CONNECTION NEWSLETTER WINTER 2016 TAKE A STEP TO END MS Every once in a while, a challenge calls that you simply must answer. The North

WINTER 2016

MS CONNECTION NEWSLETTERTAKE A STEP TO END MSEvery once in a while, a challenge calls that you simply must answer. The North Florida Chapter is thrilled to kick off 2016 with two very different challenges: Challenge Walk MS on February 26-28 and Walk MS on April 9, 16 and 23. Both events will make an extraordinary difference in the lives of the 18,000 people affected by MS in North Florida this year.

Carrie Knife, a Ft. Walton Beach resident, participates in both Walk MS and Challenge Walk MS annually. Carrie will celebrate her seventh year as a Walk MS team captain and her third year as a Challenge Walk MS team captain this spring. Carrie walks in memory of her mom and in honor of three other family members living with MS. She says that although her motivation for participating in both events is the same, the reasons for returning each year are very different.

Challenge Walk MS: Savannah 2016 is a three day journey to walk 50 miles throughout and around historic Savannah, Skidaway Island and Tybee Island. Approximately 300 participants from across the Southeastern U.S. will aim to complete the challenge. What makes these participants even more incredible is that individually they will raise a minimum of $1,500 and together they will raise a total of $675,000 to support the National MS Society.

When asked what she would say to a potential Challenge Walker, Carrie laughed and said, “It’s only 50 miles! But really, it is certainly a

physical challenge for anyone walking 50 miles in three days. We do get blisters, and we are SORE but when all of that is said and done our blisters go away, our muscles feel better and after a day or so we go back to life as normal. What does not go away are the daily struggles that people living with MS face. Challenge Walk does a great job of putting that into perspective.”

Carrie’s favorite part about Challenge Walk is a tie between the Final Mile where all participants who are living with MS lead everyone in to the finish line at the end of day three and the Candlelight Ceremony on Saturday night which she says “is truly a program that you have to be a part of to understand.”

Walk MS is the heart of the National MS Society and the rallying point of the MS movement. This event is the entry point to the Society for many people affected by MS.

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CARRIE (RIGHT) WITH TEAMMATE EMILY AT WALK MS

02 MS CONNECTION: WINTER 2016

LETTER FROM THE PRESIDENT

Friends,

Together we are stronger. This statement describes what the MS movement is about. All of us—comingtogether—sharing experiences, knowledge andcontributing all that we can year round to end MS.

Our promise is ambitious and powerful: 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.

To achieve our mission, we must accomplish three things:• People must have effective treatment solutions to the challenges of

MS• People affected by MS are connected to the individuals, information

and resources they need to move their lives forward• Individuals and organizations are mobilized to generate resources

that accelerate progress and maximize impact

We are providing leadership in the international Progressive MS Alliance, helping to galvanize the world in finding solutions for PROGRESSIVE MS—specifically.

People affected by MS must be connected so that they can be more powerful than their MS. They must be able to share experiences and learn from one another – in person, over the phone, and online.

We must increase and effectively allocate resources to achieve our goals of accelerating progress.

I hope to see you in 2016 at one of our special events and programs!Together, we are stronger. Together we will change the world for people with MS.

Corrina Steiger Madrid Chapter President

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

03NATIONALMSSOCIETY.ORG | 1-800-344-4867

WHAT FATIGUE MEANS TO MEBY KELLEN PROUSE

Most folks have a pretty good idea of what the word “fatigue” means. But for me, using that word to describe the kind of exhaustion I experience doesn’t seem specific or accurate enough. When that tired sets in, I can’t just wait it out. It’s not like being worn out from a workout, where you can recover with a few hours of rest.

The tiredness never comes on during bedtime; oh no, that would be way too easy. Instead, it comes on when I’m driving or trying to enjoy my son’s soccer game. I often think I can power through it. But if I don’t make it to the couch, you will see me slumped forward and most likely drooling in my lap. This can happen just about any time, anywhere. I have even fallen asleep mid-conversation.

If we go for a walk, I will be wiped out for a day, maybe two. Even showering is tiring. But the harder part to explain is how emotional stress can knock me down just as much. Being nervous, upset, or stoked about something can really take it out of me. So, between the physical act of doing something, and the emotional stress of just about anything, I am pretty much always tired. That isn’t even counting the days where just sitting, doing absolutely nothing, kicks my butt.

Even though sleeping doesn’t necessarily make the tiredness go away, it’s something I do a lot of. That is one benefit to being on disability; there aren’t many, but I will take this one.

MS-RELATED FATIGUE CAN BE HARD TO DESCRIBE PHOTO CREDIT: MEGHANN PROUSEThe doc also advised me to get brain rest (much like meditation). Basically, I need to find a quiet place away from the computer and phone, and just be. I think that’s good advice for anyone though.

I don’t speak for all people with MS when it comes to fatigue (since we all have different triggers), but our fatigue is very real, very hard to explain and very frustrating. I only fell asleep four times while writing this ... not too bad.

Originally published at MSconnection.org. l

IN MEMORY OF...Mrs. John (Georgina) Ganan Laverne Boing

Alexander Kostenko Laura Copeland Gary Smith

Bradford Roueche Carolyn Erite

Leisbeth Walters Sherry Wood

“IF WE GO FOR A WALK, I WILL BE WIPED OUT FOR A DAY, MAYBE TWO.”

04 MS CONNECTION: WINTER 2016

2015 ANNUAL MEETING

In December, the North Florida Chapter presented its annual awards to those who made a resounding impact on the chapter in 2015.

The Corporation of the Year was awarded to Mayo Clinic, a company who has contributed to the success of the chapter in so many ways. While our partnership began 20 years ago, this year the Mayo Clinic Bike Team reached a truly remarkable milestone by reaching the million dollar mark! Patients, staff and family of all fitness levels have made up the members of the Mayo Clinic Bike Team since 1995 and Walk MS in past years. They have been a Bike MS sponsor for many years and we were thrilled when they returned this year as an official sponsor.

The 2015 Fundraiser of the Year award went to a truly selfless and generous individual, Mitch Owens. Mitch came into our lives in the early 90’s when his wife was diagnosed with MS. Since joining our movement, Mitch has given more than $300,000 for research and local services with grace, humility and a relentless passion to create a world free of MS.

The Partner in Hope Award is one that’s given to the individuals or organizations who make an impact on people with MS in North Florida. This year’s winners, Team Big Bananas, a Bike MS cycling team, raised a record $126, 200 for Bike MS: PGA TOUR Cycle to the Shore plus $9,000 for Challenge Walk! Additionally, Team Big Bananas participated in MS Service Day events. Their outstanding fundraising and

MEMBERS OF THE BIG BANANAS TEAM AND THE MCAFEE FAMILY AT THE 2015 ANNUAL MEETING

volunteering are just two examples of their dedication to ending MS.

While we have many amazing MS fundraisers, the next award winner has made it a family affair. Donna, Don, Zachary, and Josh McAfee have participated in Society events together as a family for several years. When asked why they ride in Bike MS, Josh responded, “my mom is my hero and I want to do everything I can to prevent more people from learning what it means to have to live with MS.” Not to be outdone, Donna showed off her nursing skills and served as our medical lead for the entire Bike MS weekend. In addition to Bike MS, the McAfees have also been long time supporters of their local Walk MS event in Gainesville. Over the years, the McAfees have raised a total of more than $45 thousand dollars as a family.

The Volunteer of the Year award was given to someone involved in many different ways. For the past two years, Jane Healy has led the Tallahassee Self Help Group.

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05NATIONALMSSOCIETY.ORG | 1-800-344-4867

PARTNER SPOTLIGHT

BIKE THE US FOR MS

Bike the US for MS is a nonprofit organization with the goal of having a positive impact on everyone living with MS. Through cross country cycling trips, they raise funds for MS research and treatment, home modifications, medical equipment, and awareness.

Cyclists stop in towns across the country to volunteer for people living with MS. Their projects include: yard makeovers, cleaning, painting, or anything else that may be difficult for people living with MS.

In the North Florida Chapter territory alone this year, Bike the US for MS has funded the widening of three doorways to make them wheelchair accessible, and helped with the replacement of an AC unit during this hot Florida summer.

In March, local Bike the US for MS participant, Nghi Lam, helped the Chapter with MS Service

Day. Lam made a big difference in the life of someone living with MS by helping with indoor cleaning, repairs, and other tasks that were a challenge.

If you live along one of the Bike the US for MS routes and would like the cyclists to stop by and give you a hand, contact Bike the US for MS via email at [email protected].

Want to help change the lives of others while participating in an adventure that will likely change yours? Visit biketheusforMS.org for more information. l

2015 ANNUAL MEETING...continued from page 04

In addition, she also serves on the Tallahassee Luncheon Committee, the Tallahassee Walk Committee, as a Walk MS Team Captain and as a Walk MS High Roller.

The final award was a room dedication to Someoneone who fuels special events more than anyone else. The Chapter has a storage room that houses all the things needed to run Bike MS and Walk MS, and it was fitting to name this very important room after one very important person- board member and Bike MS chairman, Walter Steele! The Chapter is proud to unveil the Walter Steele Storage Room.Many congratulations and thanks to our award winners and all who volunteered in 2015 to help create a world free of MS! l

LAM PICTURED FAR LEFT AT MS SERVICE DAY

06 MS CONNECTION: WINTER 2016

2016 ADVOCACY EFFORTS

The National MS Society is currently preparing for our 2016 Advocacy Efforts. Every year, MS Activists participate in state and federal advoca-cy events to raise MS awareness and be a voice for all impacted by multiple sclerosis. This year, the North Florida Chapter will participate in two large Advocacy events.

On January 28th, MS Activists from around the state will gather in Tallahassee at the Capitol Building for our 2016 State Action Day. While wearing orange, constituents will meet with state elected officials to talk about MS and current policy issues impacting the MS Community. This year, our state advocacy issues will include Medicaid Expansion and Disability Awareness and Education.

From March 14th to March 16th, MS Activists from across the nation will meet in Washington, D.C. for a three day advocacy conference. During this conference guest speakers will share their stories, and give insight on how to leave a lasting impact with Senators and

Congressmen from across the country. On the third day, MS Activists storm Capitol Hill to make meaningful visits that bring current MS issues to the desks of elected officials.

There are currently two main policy issues that The National MS Society will be focusing on during the Public Policy Conference. The first issue deals with Federal Funding. We will advocate to continue funding for the National Institutes of Health (NIH) and Multiple Sclerosis Congressionally Directed Medical Research Program (CDMRP) to help prevent, treat and find a cure for MS. The second focus is to pass the Advancing Research for Neurological Diseases Act of 2015. This bill will mandate that the Centers for Disease Control and Prevention track the incidence and prevalence of neurological diseases, including MS. This new data system could one day lead to a cure for diseases like multiple sclerosis, as information collected will provide a foundation for evaluating and understanding aspects of these diseases on which we currently do not have a good grasp – such as the geography of diagnoses, variances in gender, and changes in healthcare practices among patients.

The National MS Society is always looking for volunteers to become involved with advocacy efforts. Whether you are looking to plug-in at the national level, locally, or even from the convenience of your home, there are many ways to get involved. For more information about advocacy opportunities, call 1-800-344-4867 or e-mail [email protected]. l

ADVOCACY

2015 MS ACTIVISTS WITH GOVERNOR RICK SCOTT

07NATIONALMSSOCIETY.ORG | 1-800-344-4867

TAKE A STEP TO END MS ...continued from page 01

Walk MS is a one day festival and celebration with a walk component allowing participants to feel powerful by providing an opportunity to do something for someone they care about that has been diagnosed with MS. Walk MS offers 5k (3.12 miles) and 1 mile route options at each of the seven locations but participants are encouraged to join the fun regardless of their ability to participate in the walk.

Although participants are encouraged to fundraise, registration and participation are free for Walk MS which is why Carrie encourages anyone with even the slightest connection to MS to come out to one of the Walk MS events. “The walk isn’t very long and it’s always a beautiful spring day. The more walkers we have, the more exposure we bring to the community,” said Carrie.

Her favorite part about Walk MS is the way that the event brings her local community together and the connections she has made over the years. She says, “Being involved in Walk MS has allowed me to meet people from my community who I would have otherwise never met. I have formed huge friendships with so many people in the Ft. Walton Beach and Pensacola communities through Walk MS.Contributions raised by Challenge Walk MS and Walk MS support local programs and services for people living with MS as well as national MS research. Whether your challenge is walking a 5k, 50 miles, or simply coming out to either event as a volunteer, we invite you to take a step to end MS in 2016.

We look forward to seeing you at one of the upcoming events!

Challenge Walk will be held February 26-28 in Savannah, Ga. For more information visit challengeMS.org. Walk MS Events will be held April 9th in Ft. Walton Beach, Pensacola and St. Augustine; April 16th in Gainesville, Orange Park and Tallahassee; and April 23rd in Jacksonville. For more information visit WalkMS.org.

If you would like more information or have questions about either event, email [email protected] or call 855-372-1331. l

SAVE THE DATE: BIKE MS 2016

30TH ANNIVERSARY RIDEOctober 22-23, 2016

Registration is open at bikeMS.org.

CARRIE (RIGHT) WITH BEST FRIEND/TEAMMATE PATTY AT CHALLENGE WALK MS

VOLUNTEER SPOTLIGHT This month’s volunteer spotlight is Emily Reilly from Ft. Walton Beach. Emilywas diagnosed with MS at age 17. While living in the Dallas area, Emilyvolunteered at Walk MS and MS Kid’s Camp, where she met her husband,Kevin. Despite the diagnosis of MS, Emily went on to play four years of collegiate soccer and was honored as an All-American goalkeeper her first year.

After Emily and her husband relocated to Ft. Walton Beach, Emily becameconnected to with the chapter at Walk MS in 2015. Emily expressed an interest in creating a modified fitness program for the MS Community. Emily became group fitness certified and set a goal to create something that would not only be fun, but beneficial for the participants- physically, mentally and emotionally. Within 6 weeks, some of the participants saw improved balance and an increase in energy and overall wellness. The class has is now offered a weekly basis in the Ft. Walton Beach area.

When asked why she volunteers, Emily said, “I love encouraging others that MS does not have to define or stop them from living life to the fullest. I am so blessed to have this opportunity to impact the community by encouraging people to keep moving despite their MS!” We appreciate Emily and all that she does to enable the MS Community to live their best lives. l

EMILY REILLY

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