MS Awareness Week is March 11-17!
Get Connected.
Check back here each day to see a new profile of someone affected by MS and they're connected to creating a world free of multiple sclerosis.
Click on a photo to read each person's story
Monday
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Tuesday
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Wednesday
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Thursday
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Friday
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Saturday
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Sunday
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Monday, March 11 - Jen DeFillipo
When Jen was 21, and living with her boyfriend, she noticed her legs below the knee felt numb. She ignored it and it went away, but then later, while at class, she was twirling a pencil and it flew out of her hand. She didn't just drop it by accident, it literally flew across the room and hit the front wall. That certainly got her teacher's attention, who stopped the class, walked the pencil over and returned it to Jen, with the rest of the class focused on her. Mortified, she called a doctor, who sent her to a neurologist.
After an MRI and a lumbar puncture, Jen was called back for another appointment to go over her results. Her neurologist presented the results going over each item, and then ultimately declared, "You have MS." Jen had never heard of the disease and her first thought was whether or not she would be able to have kids.
Eight years later, at the age of 29, Jen has two beautiful children (Owen, 6, and Jackie, 5, pictured with Jen on the left) and that live-in boyfriend is now her husband.
Jen and her family have benefited greatly from Society events and classes. They have been a part of the Knott's Berry Farm Family event, where she got to see a lot people living with MS relaxed and comfortable. This allowed Jen to relax herself, and that added to her children's enjoyment of the event, as well as bringing her family closer together. Jen has also been a part of the Women's Wellness Weekend, and other education classes, as well has helping to co-facilitate a support group for people with progressing MS.
Jen and her family also participate in Walk MS, and 2013 marks their third year attending. Jen tells us, "The Walk has such a positive vibe to it. I'm in an electric wheelchair and everyone is courteous of that. I was given plenty of room to move around. My participation in Walk MS makes me feel as though I can make some difference in finding a cure. I also get the sense of paying back what the Society makes available to me. I cannot overstate the value of feeling as though I am helping others with MS. It is only through involvement that this is possible."
Join Jen and thousands of others who support Walk MS by registering, donating, or volunteering! Learn more.
Tuesday, March 12 - Megan Nicole O'Neal
"About four years ago, my family learned some devastating news: my mother, at 43, was diagnosed with MS. She had been having troubles with her vision and balance and visited countless doctors who had no idea what could be causing her issues. Needless to say, the news came as a shock when I was visiting home over Spring Break during my freshman year of college. Our family was paralyzed by the diagnosis and no one had any idea what to do next. Millions of questions flooded our minds and all we could do was sit by in silence as my mother stood strong with the news. The last night of my Spring Break I was watching TV late at night by myself when a commercial came on, talking about the Southern California MS Challenge Walk. I had never seen the commercial before (nor have I ever seen it again), but it sparked something inside of me that night.
I am the kind of person who DOES something when things go wrong; I am a doer, and it was killing me inside not being able to do anything for my mom in her time of loss and confusion. I had little to no knowledge of MS at the time, and didn't know events like this took place. After watching that commercial, it dawned on me; what do you do when there is no cure for the problem you face? You raise money for the people who will be able to find it.
A week later I sprang into action, recruited my best friend, and signed up for Challenge Walk MS 2008. In 4 months we raised enough money for both of us to participate (which in my opinion is the hardest part of the whole process). We walked every inch of those 50 miles and at the end of the walk, 12 blisters and sore knees later, I saw my mom's smile and knew it was all worth it. I have participated in two more Challenge Walks since then and plan to walk again this year.
Walking is a way for me to show support for my mom who faces the challenges MS throws at her every day with poise and humility; she finds ways to laugh at the shot injections and bruises, and (though it would be perfectly granted) does not sulk in her limitations. She shows a silent strength that is inspiring and heartbreaking at the same time. Participating in the Walk each year is my way of reminding my mom that she isn't in this alone, and there is hope for better treatments (yay for the new pill medications!) and even a cure in the future. She has been by my side every step of the way throughout my life and I will take these steps for her to help her in whatever way possible."
Be a part of the inspirational weekend that is Challenge Walk MS by registering or volunteering! Or, if you can't be a part of the event, you can donate to Megan's 2013 efforts.
Wednesday, March 13 - Keith Baker
When Keith Baker was diagnosed with Remitting/Relapsing MS three and a half years ago, he was stunned. He had been experiencing intermittent double vision and paralysis on his left side, and went to Urgent Care to see what was wrong. Keith shares, "My official diagnosis came at 10:00pm. I was tired and cranky after being poked and prodded all day. The first thing I did was call a friend, who I know had connections to the disease."
Two years later, Keith decided to take his diagnosis and do something with it. Turns out, 2012 ended up being a breakout year for him as an MS Activist. He volunteered at the MS Golf Invitational and then, took on a bigger adventure by signing up to participate in the 3-day, 50-mile Challenge Walk. "I was extremely emotional finishing my first Challenge Walk," declares Keith, "having my daughter meet me at the end meant the world to me. To see the route lined with people cheering us on, certainly washed any pain that might have been present away. I was high on the positive energy for three days after."
Deciding he wanted to do even more, Keith then signed up to become an MS Rockstar, and completed his first half marathon on January 20 of this year. He's looking forward to completing eight events in support of the National MS Society in 2013. Keith asserts, "I am healthier now with MS than I was before I was diagnosed. I want others to know that as much as I have MS, the disease does not have me!"
When asked how he would encourage others to get as involved as he has, Keith shares "I would let them know what it is like to live with MS, and the uncertainy of the disease. I don't think a lot of people comprehend that you can go to sleep feeling fine, and wake up the next day with paralysis, optic neuritis, or that you can wake up feeling the same as you did the night before. Every night you close your eyes, and it's possible things won't be the same the next day."
But that's not to say that Keith isn't hopeful. He asserts, "With the advances that have been made in such a short amount of time, there is a feeling that we are closer every day to a cure." The Society has been the leader in cutting-edge MS research, with two oral drugs coming to market in just the last two years. It's because of efforts like Keith, and so many others that the Society is able to put as much money as possible toward our mission to create a world free of MS.
Learn more about the MS Rockstars and join Keith for his race in 2014!
Thursday, March 14 - Claudia Duryea
Claudia's story begins like this: Before car seat laws were in effect, a mother, four young children, a grandmother and a cousin were involved in a serious car accident. While the car was spinning out of control, the youngest child, a 9-month-old, was ejected out the rear window. Emergency crews arrived, and the cousin saw her aunt pinned under the car, not moving. She saw her grandmother and three of the children being taken care of by paramedics and police. Then, she noticed the baby on the road.
She picked up the baby, lifeless, not breathing, bleeding from her head, and pale as can be. Frightened, she shook the baby, and in doing so, caused the child to gasp and begin breathing again. Everyone ultimately recovered, and sometime later that cousin was diagnosed with MS. The infant in this story was Claudia.
Claudia doesn't remember when her cousin, Christina (pictured center in the wedding dress), was diagnosed, but she remembers how she felt when she found out. Claudia recalls, "I remember feeling very sad a frightened since my aunt was already losing her mobility at the time.Fortunately, Christina is dignoased with RRMS and the disease has progressed slowly." Claudia knew she had to do something for her cousin. "All my life, my cousin has been one of the greatest supporters of my endeavors and there is no way I can let this disease consume her. She saved my life and I now walk for hers." A two year "Sole Survivor" of Challenge Walk MS and a Walk MS participant, Claudia started her team "Got Nerve?" in 2010, and is excited to show her support for her cousin in 2013. "Participating in an event where the purpose and cause is so personal is incredible. I have met some of the most amazing people, both with MS and without. I have made friendships and it feesl like a family reunion when we return each year," declares Claudia. She continues, "I can help my beautiful cousin, my inspiration, Christina as long as I do my part in bringing awareness to this disease. I know I am helping others as well."
For someone who is still unsure about getting involved, Claudia shares these final thoughts: "Just do it! There is absolutely nothing to lose and everything to gain in meeting new people, making new friends, and learning something new about this disease and yourself. The strength, kindness, love and gratitude felt at these events cannot be described; they can only be felt first-hand."
Dip your toe in the water at Walk MS in April or, take a greater challenge at Challenge Walk MS in September.
Friday, March 15 - Holly Jocoy
When Holly Jocoy noticed a numb patch on her left thigh in early April 2006, she didn't think too much about it. Later that week, after running a 5k in Carlsbad, the 42-year-old noticed the symptoms had began to worsen. She felt a sharp pain on the left side of her back, and more numbness and tingling was spreading down the left side of her body. Holly knew this was not normal and made plans to see her doctor as soon as possible.
Since it was a Sunday, and an appointment couldn't yet be made, Holly decided to call an advice nurse and see what she thought. While on the phone, Holly experienced increased numbness, this time on the left side of her face. The advice nurse told her to call 911 immediately.
An ambulance ride, six hours, and dozens of tests later, doctors determined that Holly was not having a stroke, or had Bell's Pasly, or had Parkinson's. She was sent home with the strict instruction to see her doctor first thing the following day. Her primary care provider recommended her to a neurologist, but upon being asked what his gut feeling was, he said, "I think you have MS." His gut ended up being right on.
Diagnosis didn't come easy, however, since everything else had to be ruled out completely. Holly describes, "there was frustration from not knowing what was going on with my body, but I tried to keep a good attitude throughout. Every test the doctor wanted, I did. After all, he was working really hard to narrow the mystery down." Seven months later, in November of 2006 Holly was officially diagnosed with MS. "I itched to get on the Internet to learn more about it," she continues, "I primarily wanted to know if it would kill me. I ordered books, I read, I joined Patients Like Me. I became assured MS was not, in fact, going to kill me."
From there, Holly got involved. First, by attending programs to learn more, like the Newly Diagnosed Seminar. She admits, "I was really shocked at how many people there had walkers, canes, and wheelchairs. I was sure that was going to be me. It was scary. Really scary. But nothing like that happened to me. Today, when I go to event, I see people with assistive devices and know I am in the right place...'with my people.'"
In 2007, Holly joined Walk MS and has been an avid participant every since. She's walked in Irvine twice, in Ohio once, and 2013 will mark her 2nd year in Carlsbad. "I am very excited about the MS walk this year," Holly elaborates, "A community activist embraced the cause and together we created Team Carlsbad. We added the most new members during Team Week and earned a team tent where we will all gather. As of 45 days before the event, there are 172 walkers on the team. We have established a joint goal of $10,000 and are 48 percent there already."
Holly goes on to share why she is happy to be a part of Walk MS. "I have comfort that progress is being made," she shares, "Six years ago, when I was diagnosed with relapsing-remitting MS, there were three approved disease-modifying therapies, with three pending approval. Today there are nine approved disease-modifying MS therapies available. We are moving in the right direction together, with each Walk MS step we take. I walk for those who can't. I walk to prevent anyone else from getting MS. I walk to try and reverse the impact MS has had on me and others like me. I walk because I can. Because I must."
Join Holly and thousands of other people at Walk MS this April at UC Irvine on Saturday, April 21, LEGOLAND® California Resort on Sunday, April 21, and NTC Park in San Diego on Saturday, April 27. Learn more or register today.
Saturday, March 16 - Steve Bettis
Avid surfer, Steve Bettis didn't learn he had multiple sclerosis until he was 57 years old. After meeting with his doctor, it was plain to see that the tingling in his feet, and inability to wiggle his toes were early signs of MS, as was the slight balance loss. Those issues hadn't posed a problem earlier, so it hadn't occured to Steve to mind.
Upon hearing the diagnosis, Steve's first reaction was telling the doctors he would probably need a longer surfboard. "The idea hadn't really set in," Steve continues. "My next reaction was extreme depression and fear. I didn't know how MS was going to change my life. That same night, I received the 'Superindendent of the Year' award from the American Subcontractors Association, and as I accepted the award, I couldn't help but wonder what kind of life was ahead of me."
Despite those early fears, Steve remains nothing but positive. He credits his family with helping him. "My family was and remains incredibly supportive," Steve shares. "None of us knew anything about MS. I think I realized early that how I portrayed my condition would mean a lot to my wife and children. Instead of looking at things I couldn't do, I focused on what I could do."
What Steve could do was reach out to his chosen family: a community of surfers to help him raise money and awareness for MS. This fall, Steve, and long-time friend, Mitch Murphy are producing a paddle out in Ocean Beach. Steve encourages anyone to come out and participate. "I feel like I have so many people who are in the same situation as I am, and that I'm not alone. With the great support of all these people, we can win the fight to cure MS."
Join Steve and hundreds of other people as they "Wave Goodbye to MS" on October 5 at Ocean Beach Pier. Learn more by watching the video above, or by visiting their website.
Sunday, March 17 - Amanda Ortiz
Those who have a parent living with MS, know that life can be a little different. Can you imagine having both parents living with MS? This is Amanda Ortiz's reality. Her mother was diagnosed with Relapsing Remitting MS before she was born; her dad, diagnosed with Primary Progressive MS when she was two. "Growing up, I always knew my dad was different than most other dads," Amanda shares. "He walked with a cane, and had short-term memory issues. I always felt sad for him when he had any of the side-effects of MS, but my emotional reactions were short-lived because my mom and dad never let MS get them down."
This is true for the whole Ortiz family. Amanda declares, "I feel that my life isn't any different than any of my friend's lives." Being one of nine children means plenty of support, and her parents are dedicated to family and education. "My parents did everything in their power to have us involved in after-school activities," Amanda shares. Times aren't always easy, but Amanda focuses on the positive. "My family is affected because our dad cannot be the father and grandfather that he desires to be. He is young at heart, but his body is that of an ancient man. Despite this, we are so thankful for the life lessons we are taught on a daily basis. I've learned many character traits, compassion especially, that make me a better person. I would not change the life I was dealt for anything in the world."
Amanda and her parents connected to the chapter through programs like the "Man to Man" support group, balance classes and family events. She then got involved through Walk MS after she learned her best friend had been walking in honor of her parents for the past few years. "I instantly felt compelled to join her," Amanda exclaims. "I feel more and more motivated year after year. I feel an immediate connection to everyone who is donating their time and money to support the cause and I feel passion to do more. Our team has grown every year, and we strive to encourage all our family and friends to also join the movement."
"I am involved because I like that the money raised goes to programs and services available to people living with MS," Amanda continues. "Events like Walk MS get people involved in a cause that helps raise awareness and funding."
Join Amanda and her family at Walk MS in April! Learn more, register, volunteer, or donate.