Paul Robertson – Captain, FFMD
Paul thought muscular dystrophy meant putting his dreams on hold. Now he is living unlimited and saying “Watch me!”
Paul Robertson can tell you how falling down can change the course of your life, twice—for worse and for better.
For many years, he experienced a series of trips and stumbles, small difficulties getting around and a propensity to catch his feet and toes. His sister Nicole, 11 years younger, had similar tendencies. Maybe they were just clumsy, they thought. Paul saw a doctor about his knees.
He saw more doctors, who performed more tests, and eventually he was told he had a muscle disease, but not what kind, or how it could affect him. Eventually, after years of research and work with doctors, DNA testing confirmed Paul had limb-girdle muscular dystrophy (LGMD) form 2J.
At the time, he was in his 30s, ran his own successful construction business and had a wife and four children. He coached sports teams and visited work sites and met with clients.
“Really, I didn’t want to admit that I had muscular dystrophy or that I had a problem,” Paul said. “When you’re in denial with a disease and you don’t want people to know about it because either you feel ashamed of it or you’re just trying to beat it or whatever it may be … you know eventually, you have to ask for help.”
Shortly after Paul’s diagnosis, his sister Nicole was also diagnosed with LGMD as well, and the two found themselves leaning more and more on each other. Initially, neither was forthcoming with their disease or its prognosis.
“It took some time,” Nicole said. “But one day I just woke up and thought, you know what? This is a part of me. This is who I am and if I don’t accept it, how can I expect other people to accept what’s happening?
“Paul would not say the words ‘muscular dystrophy’ for many, many years,” Nicole said. “I kept saying to him, ‘Just own it. You’re all in with everything that you have—just own it.’”
Paul said he gives Nicole a lot of credit for learning to accept his diagnosis.
“She was a big push and a big help for me, you know, coming to grips with what I was dealing with and being able to say, ‘Hey, we’ve got to take control of this disease.’ And it’s great to have a sounding board when you’re having some of those days when things just aren’t feeling right. To be able to reach up, pick up the phone and call and say, ‘You know, I’m having a tough day’ … that’s been really good for the two of us.”
But Paul had to fall one more time before his plan, purpose and passion truly aligned. Paul calls it his “Superman moment”: He clipped his feet at the top of the garage door stairs, flew through the air and landed horizontally on the garage floor.
Emotionally, he didn’t take it well. He said as much to a friend who called him later that day. Paul told his friend he didn’t know how to cope.
That friend reminded Paul of a dream—a wish Paul had once expressed to build an offshore fishing team.
“Dreams expire,” his friend said.
And so Paul’s life changed again. He’d grown up in Ocean City, Md., fishing on boats or off bridges. He loved how it brought together family and friends and created the opportunity to get to know new people—not to mention relieve stress.
Paul wrote a letter to MDA CEO Stephen Dirks saying he wanted to fish in support of MDA. He got a call the day his letter was delivered.
In 2015, Fishing for Muscular Dystrophy was officially formed in a strategic alliance with MDA. The full-time offshore fishing team competes around the U.S., donating tournament winnings and a significant amount of sponsor and other proceeds to MDA.
“My goal as an individual is to build a program that will be able to donate a million dollars per year to the MDA,” Paul said.
“There’s a lot of great things we can still do with our lives,” he said.
It all goes back to that question sister Nicole put to him: Why not be all in?
“Everything in life isn’t always positive, but when you do have things that are challenges … that’s OK. You learn from it, you move forward and there’s always a new challenge and a new project tomorrow.
“‘Live Unlimited,’ to me, is not letting obstacles get in your way for living out your dreams,” Paul said. “Whatever obstacles you’re dealt in life … you’ve go to go out there and you’ve got to demonstrate and show people you can do things. You can succeed. You might have to ask for help, and you might have to have others do it with you, but it doesn’t mean you have to bear everything on your own shoulders to live out your dream.”
Joey Hurley – First Mate, FFMD
Joey, from Annapolis, MD has been serving as First Mate with FFMD since 2017. He loves being on the water and fishing is in his blood. In his time with FFMD, Joey has fished the sailfish circuit in Florida, The Mississippi Billfish Classic, and the Ocean City billfish tournaments. In August 2018, Joey helped reel in the winning 69 lb White Marlin in The MidAtlantic out of Ocean City, MD.
Tiffany Tillotson – Executive Director, FFMD
Tiffany joined FFMD in July 2018 after working with the Muscular Dystrophy Association for six and a half years. She and Paul met in 2015 when Paul was forming the FFMD Foundation. After partnering with FFMD on the MDA Muscle Team gala for two years and helping raise nearly $1 million, Tiffany transitioned to the FFMD team to help them grow and strengthen their fundraising impact to support the muscular dystrophy community.
Kenny Garufi is from Howard County, MD and has been on the team since 2015.
Kenny met Paul Robertson through little league sporting events when Paul was the football coach for one of Kenny’s four sons. Kenny states “It was at that time that Paul and I forged a friendship and discovered they both have a mutual passion for fishing.” Kenny spent many years learning the ropes from his mentor and cousin Captain Russ Garufi as a mate on the Rusty Nail. Shortly after the inception of Fishing for Muscular Dystrophy (FFMD), Paul invited Kenny to join the FFMD Team – Kenny has been on board ever since. When asked why Kenny decided to go “All In” with the FFMD Team, Kenny said “After being exposed to the FFMD Team, the mission and the people associated with FFMD, I began to attend many of the events, fundraisers, and tournaments. I have a passion for helping others as well as a passion for fishing so joining the team allows me to not only do what I love, but it also gives me a chance to give back to the community, the Muscular Dystrophy Association and most importantly, to Paul. I give Paul a lot of credit for what he has done – he is a creative genius.”
Kenny is a self-employed contractor and the owner of Americraft Home Improvement.
Kevin Huey – Angler, FFMD
Eric Shatzer – Angler, FFMD
Eric was born and raised in Prince George’s County, MD and currently resides in Howard County, MD with his wife and ten children. He started his career as an electrician and became vice president of Hawkins Electric Company in 1991. In 1997, Eric became president and CEO of Hawkins Electric Service and then in 2010 he established Hawkins Electric Construction.
Eric’s involvement and commitment to the success of FFMD come from not only wanting to make a difference in the lives of those impacted by muscular dystrophy but also from his commitment to his friendship with Paul and the brother-like relationship that they share.
Eric’s hobbies and interests include his kid’s sports activities, riding his Harley Davidson, dirt bike riding, fishing, boating, camping, and skiing. When asked what his most memorable fishing moment was, Eric said it has to be the day that his son, Kyle, caught a record croaker when he was six years old.
Kristin Robertson – Land Mate, FFMD
Kristin was born and raised in Reisterstown, MD and attended Franklin High School before attending the University of Richmond and then graduating from Clemson University with Bachelors in Elementary Education. Kristin then went on to get her Masters of Science in Administration Supervision from Western Maryland College.
Kristin was an elementary education Teacher for six years and then traded in her title as a teacher for the title of Supermom when she became a stay-at-home Mom for 16 years. Now that Kristin’s children are growing up, Kristin has decided to return to teaching as a Preschool Teacher.
Kristin’s greatest passion involves supporting her husband’s efforts as well as remaining active in the multitude of activities in which her children are involved.
FFMD is near and dear to Kristin’s heart as her husband is Paul Robertson, the founder of FFMD. Kristin has participated in several FFMD events by volunteering her time at the FFMD tent, coordinating schedules and most importantly she has been and continues to be a true sounding board for her husband.
When asked about her most memorable fishing experience, Kristin said: “winning a trophy for third place in a kids’ tournament the first time I ever fished – I caught the most fish!”
Nicole Robertson – Land Mate, FFMD
Nicole made the choice to get involved with FFMD the day her brother presented her with his dream of creating a fishing team that would not only educate others about what it is like to live with Muscular Dystrophy but also raise funds to cure a disease that impacts her directly. Nicole is Paul’s younger sister and she too has Limb Girdle Muscular Dystrophy.
Nicole currently resides in Cambridge, MD and is the President of The Robertson Group, Inc. Nicole’s passions include her family, raising awareness for those living with MD, attempting to recreate her favorite Pinterest finds, traveling, reading and boating.
While Nicole spends most of her time supporting FFMD from land, she has attended several tournaments with the team and contributed to their cause by running the tent and educating others about FFMD’s mission as well as the impact that Muscular Dystrophy has had on her, her brother and their loved ones. Nicole states “Supporting FFMD gives me an opportunity to share personal stories with others as well as share the ways that our community can come together to support help those living with neuromuscular diseases. By providing personal experiences with others, it gives me a chance to help those that have Muscular Dystrophy feel less alone. While living with LGMD creates a multitude of obstacles, I have learned that sharing my experience has created a platform to help myself and others realize that there are so many ways in which one can thrive regardless of a diagnosis of LGMD.”