New York City Marathon 2013

Stories From the Road

Steve Wisinski - Participated in honor of Jack DeWitt

Last year after NYC Marathon was cancelled I ran in another marathon in Columbia City, IN, which is about 4 hours from my house.  I wasn't able to finish that race due to a stomach bug, but the DeWitts came down to support me and gave me the clock necklace as a trophy. They were very sweet and supportive and that trophy has meant a lot to me. Since I was finally able to run this year I made sure I brought the clock with me.  

It was an amazing feeling finishing that race after two years of preparing.  And running for FARA and for

Steve at the Finish Line!

Jack was huge motivation and inspiration to get through it all.  This was by far my best and most complete marathon and I still have the "runner's high" when I think about it.  I think running for this cause was a big reason for it.  I had a goal bigger than myself. I knew I had a bunch of people behind me, cheering and supporting me.  

I had a small card that I used throughout the last 6 miles. I had each mile listed on it and corresponded each mile to someone whom I cherish and helped me get to where I was. It was also someone who inspires me to make it the last miles of the race (it is said the race starts at 20. I believe that).  I had Jack and FARA at my 26th mile and the inspiration hit me when I needed it most.

John and Julia Lagedrost – Participated in honor of Joanna Lagedrost

Being a part of Team FARA was great, as always. And getting the chance to represent the Friedreich's Ataxia Research Alliance in New York City was terrific. The FARA logo on our jerseys was a continual reminder of the cause for which we were running. Often it's easy to take for granted the ease of our everyday activities - things like walking, driving, pouring a glass of water, and of course, running.

Julia and John Celebrating their Victory

But being a part of Team FARA provides a reminder of the importance of the cause, especially since running a marathon stands in such stark contrast to the limited physical capabilities of the people for whom we're racing. And the outpouring of support from friends, family, and the FARA community this year was overwhelming and made the experience truly unforgettable.

Lori, John and Julia Getting Ready to Race for Team FARA!

Lori Pitta - Participated in honor of 

Donovan Simpson

When people describe the NYC Marathon as one big moving party, it is an appropriate description. I was ready for the race my training was done, I was wearing my FARA race shirt, with a picture of Donovan & I taped to my back, and my FARA baseball cap. I was running fairly strong until close to miles 12 & 13, I was becoming very overheated and was struggling.  I was trying to work through it and not be overwhelmed or negative. Thankfully my mind wandered from the physical issues and I thought hey I am running for Team FARA and for Donovan, it does not matter what time I finish, I just have to finish strong.  I am running for others that cannot run. What I am going through right now is nothing compared to what Donovan and others with FA have to endure every day.  That thinking flipped a switch for me and I moved away from the physical pain, I just hunkered down and kept going.

At mile 24 I was climbing up the hills in Central Park feeling weary, and I heard someone running next to me say, " is that Lori?" - My friend  Joni also running said she heard someone shout Lori, then she saw the picture on my back and knew it was me.  Joni reminding me of the picture on my back re-focused me on getting the race done and that Donovan would push me over the finish line-- and that he did.  But I received the best news of all two days later from Debra Simpson- she wrote me an e-mail and shared this news with me… "As you were running at about mile 10 or so, Donovan was walking across his own finish line for the Make A Wish walk at FDR state park.  Norm and I were supporting him, but he actually walked across the line!  Donovan's surgery was a success!" Completing the marathon was nothing compared to Donovan walking across the Make A Wish finish line. Donovan's finish is to be burnished in our memories, hopefully with many more finish line successes for FA to come in the future.

Team Van Schoick - Athens Half-Marathon - October 20th

Friedreich’s ataxia has been a part of my life as far back as I can remember. My two older sisters have FA, and my family has long been fundraising for research and awareness of the disease.  After years of hosting large fundraising events, my family took a break just as Team FARA was organized. It was a great opportunity for me and my now husband, Kyle, to start running races for FARA. The simplicity of the sign-up process makes it trouble-free for members to join your team, and by distributing the team website link, donations from family, friends, and colleagues are quick and easy to complete online.

The AthHalf in Athens, Georgia on October 20^th was our third race as part of Team FARA. With four other team members, we raised over $7,000, our highest amount yet. My family hopes to make the AthHalf for Team FARA an annual event. On Saturday, we enjoyed an afternoon of football followed by a pasta dinner. Then after the race on Sunday we all met at the finish line and stuffed ourselves with a huge brunch afterwards. In addition to raising money, food is also a good incentive to run!

I didn’t grow up a runner, but my husband did and encouraged me to start running races with him years ago. Now having the opportunity to run a race for my sisters with close friends and Kyle by my side just makes it a perfect scenario. As if that isn’t enough, our team FARA shirts sealed the deal. I ran with a sense of pride and smiled as runners asked along the course asked, “What is FA?”. Thankfully Kyle handled the answers since running 13 miles and multitasking don’t mix for me.  :)

               

By: Katie Kilch

Yellowstone-Teton 100-Miler - Kevin Bush

I first became aware of FA earlier this year when I was introduced to Bridget Downing.  When I met Bridget, while it was clear she had a leg condition, we didn't discuss the specifics.  When I later learned she has FA, I found the FARA website and educated myself on the disorder.  The more I learned, the more amazed I was at Bridget's independence and positivity, which seems to be a theme among FA patients.  She truly does not let FA define her, and it really made me consider if I would be as strong, faced with the same reality. 

I have been running since I was a freshman in high school, and in 2006 I ran my first ultra-marathon.  An ultra-marathon is technically any running distance beyond 26.2 miles, but they are most commonly between 50k (31 miles) and 100 miles.  About the time I met Bridget, I was contemplating running my first 100-mile race.  Up to that point, I had run two 50-milers and one 40-mile race, but 100 miles seemed daunting and frankly, I was scared of the training commitment and risk of failure.  I had already decided that if I took on a race that substantial, I wanted to make it bigger than just a bucket list check-off.  It seemed as though it was fate that I met Bridget and became introduced to FARA at this time.  Joining Team FARA to help fundraising and awareness for FA was a clear and easy choice. 

Marilyn (Bridget's mother) and Jamie at FARA headquarters were extremely helpful in providing guidance for my fundraising event, held 2 weeks before the race.  We had a turnout of around 75 people and raised over $2200 at the party alone.  Marilyn was in town at the time and able to attend; it was so powerful to have her and Bridget speak at the event.  I know I was moved by several who came up to me and were grateful that they had learned about such a worthwhile cause.  Many felt as I do; that the current stage of research and testing is extremely exciting and it will be awesome having made some small contribution towards the cure. 

The race began October 5th in West Yellowstone, MT.  There were about 38 runners participating in the 100-miler, and it was a frigid 16 deg F at the 6am start.  I had a phenomenal crew of 4 friends that were there to provide me food, fluids, and minor medical needs.  At mile 50, I could have one person run behind me to keep me company for the second half (called a pacer) and 3 of the 4 rotated duties in roughly 5-mile increments

My Awesome Crew: Jen, Klaus, Kevin and Lauren

 I was fortunate to have no injuries and I felt really good upon starting the race.  The first 30 miles went down easily, as the views were just spectacular.  Shortly after that, I think the effect of the cold on my muscles became noticeable, as I had a lot of aching in my legs.  That gradually improved over the next 15 miles.  Once I got my pacers at mile 50, I cruised on our conversations for 15 'easy' miles.  As we started entering some hills in Idaho, I began to walk many of the uphill sections, which is a good way to conserve energy.  Close to mile 70, I was passed by Pam Reed, who is an ultra-running legend (she's run 300 miles without sleep, and holds many records!).  I definitely started to tire as the sun set and we suited up with night gear, but my pacers kept me company and I ran a lot more than I had originally thought I would.  When I hit 'low' points, I thought about Bridget, her family, and all of the FA families I had read about, which was strong motivation.  I crossed the line with the Team FARA banner before 2am, October 6th, with a total time of 19 hours, 49 minutes, and in 7th place overall.  The race was awesome, and definitely an achievement, but becoming a part of the FARA family has truly been more rewarding!

Swim Around Key West - Kristin Jones

Friedreich's Ataxia hasn't presented physical manifestations in my body, but the repercussions of FA have rippled across my life in ways that have changed the lives of many generations to come. Over the course of my life I have watched this disease twist it's unending fist around two of my dear brother's bodies. As a young child I remember running amok with Ryan, who is two and a half years my senior, around our neighborhood with the numerous other children that lived near us. I have seen videos and have my own memories of him biking, running, laughing, exploring and enjoying his childhood. Owen, who was born four

years after I was – lived a similar childhood as Ryan did, and even had his own younger sibling to torment and explore with. Trevor was born three years after Owen was, and nine years after Ryan. It was at this time that the gravity and seriousness of the disease became apparent.

During my adolescence I was unaware that I could, at any moment, begin showing symptoms; I was naively oblivious to this fact, and until about a year ago was under the impression that I wasn't 'spared' from the two recessive genes that plague my brothers genotypes, but that it simply had never been in the realm of possibilities for me. I don't know when I finally comprehended the shocking probabilities that accompany FA – but somewhere along the line it hit that I had been given a 25% chance of inheriting FA and a 25% chance of not inheriting any of my parents recessive genes. I was tested when I was 17, my blood came back negative for both of the genes connected to FA.

A chain of events over the past two years of my life have resulted in my desire to join Team FARA. My mom, Lisa, had been toying with the idea of a fundraiser for awhile, but we needed something that required less involvement than organizing a new local event. Team FARA was exactly what we were searching for – the ability to simply create a donation webpage, ask your friends and family to donate or share, and compete in your choice of endurance event! It was exactly what we were looking for; I set up Team Ryan and Owen Jones, wrote a letter to our supporters, and started asking for donations!

I had already decided to compete in the Annual Swim Around Key West which is a 12.5 mile open water swim around Key West, Florida. What I didn't plan on was it becoming a successful FARA fundraiser and to gain as many supporters and followers from my hometown of Juneau, Alaska. I realized that many of our friends and family wanted to help us, but had no direction or knowledge of how to do it. Once I started asking for donations or help sharing the word about our Team FARA event, the money started rolling in. I had set my original goal at $1,000; by the time of the actual event (June 8^th, 2013) Team Ryan and Owen Jones had raised $5,000! One of my friends from the swimming community decided to compete in the Key West Swim with me, Cody Brunette. He helped to make this event successful by not only winning the entire event, but giving the spotlight to Team FARA. This helped to spread awareness in a whole new part of the country, basically the best possible outcome for our efforts!

I would like to continue to raise money for FARA through the open water swims I am planning to do this summer, but I need new ideas. I think I have about tapped out my friends bank accounts in the Juneau area, so I was thinking a new personal goal would be to recruit new team members. We all need to be able to use our own personal influence to inspire others to pitch in and help out as well. The amazing thing about this is that it not only helps out an incredible organization that is working towards a cure for FA, but it also helps out your own soul.

Helping others, doing something selfless or leading others to do the same is a cure for our own personal diseases. It literally does a body good to help someone besides yourself. It's an important lesson, and an easy cure for something you didn't even know you had. When was the last time you experienced pure joy? For me it was Saturday June 8 on the beach in Key West, Florida. I was exhausted, sick, salty, and sore, but as I walked out of the water after swimming for over five hours in the wavy Atlantic/Gulf waters, I only needed one glimpse of Ryan waiting for me on the beach to feel a rush of happiness – it was the best moment of my life. These moments are there for everyone – it's up to you to make a difference in your own life, as well as thousands of others that need your help. I am proud to be part of Team FARA. I have many more swims and many more joyous moments to live for, and I have Team FARA to thank for them.  

By: Kristin Jones

Check out her Team FARA Fundraising page - Team Ryan and Owen Jones

TriRock Philly - Evelyn Wu

I’ve never considered myself an athlete, let alone a tri-athlete. But when Kyle took on a new challenge and signed up for the TriRock Philly Sprint Tri (swim 0.5 mi, bike 15.7 mi, run 5K), Jamie and I decided we could push ourselves too and signed up with him. We knew it would be difficult but doable if we trained hard. I was getting in better shape every day from doing CrossFit, and to address my biggest weakness, I took a swim class at the Y down the street from the FARA office. Jamie and I also made a pact that we would wait for each other in the transition area to make sure we would both get through it, not worrying about our time. Little did we know that a week before the event, a potent virus would knock out all of the FARA staff--except me!

Although I ended up by myself on race day, I knew I wasn’t alone. Despite being sick, Felicia came out to cheer me on, and the rest of the FARA team sent encouraging texts and stayed in touch with her about my progress. On the course, I thought about all of the amazing people I have met since I started working for FARA. I knew that the temporary physical pain I felt during the race didn’t compare to the struggles someone with FA faces every day. Thinking about the limitless strength and optimism of this community pushed me to keep moving. I was representing Team FARA, and that means you don’t stop till you make it to the finish line!

I’m not sure if I will do another triathlon (at least as an individual), but I know I will continue to do my part as a member of Team FARA until we reach treatments and a cure for FA. Thank you to everyone who supported me…Together, we will cure FA!

- Evelyn Wu

Evelyn’s Team FARA Personal Page

Rachel’s Runners - American River Parkway Half Marathon

I run because I can.

When I get tired, I simply remember those who can’t

And what they would do for this simple gift that I take for granted,
And I run harder for them.

 I know they would do the same for me.

In a combined effort of inspiration from my “fit-finatatic” mother and my dear friend Rachel Gill, years ago I decided to train for my very first half marathon. I devoted my every step to Friedreich’s Ataxia Research Alliance in attempt to raise money and awareness for this rare but dreadful disease.

Rachel was diagnosed with Friedreich’s Ataxia over a decade ago, encouraged by her positive and bright spirit I finished my first half marathon. Since then, I have finished 2 half marathons/fundraisers and am now feeling better than ever, ready for my third. Each half has been motivated by Rachel, when I get tired I think of her perfect giggle and run harder for her.

I am proud to say the fundraisers have continuously been more and more successful each year. I decided to take a different route in my fundraising attempts this year and created a team. My team, Rachel’s Runners, consists of almost 20 runners. Each and every runner was asked to help spread the word and educate others about Friedreich’s Ataxia. Our goal was to raise $10,000 and while we are still far from that goal, I am very happy and proud of the number of people we were able to reach as a team and the effort that each runner has put into this cause.

Our race is May 4^th, Rachel’s Runners are both very excited and more than prepared to take on this 13.1 miles in honor of Rachel.

If you would like to join or sponsor our team please follow the link below, titled RACHEL’S RUNNERS. Any contributions would be greatly appreciated. Thank you in advanced for your support.

RACHEL'S RUNNERS

Elizabeth Way - Flower City Half Marathon

A few months ago, my good friend Tyler and I decided to run the Flower City Half Marathon, and support each other in our training efforts along the way.  Since I'm running 13.1 miles, and I've never run more than about 7 miles at a time, I immediately knew I wanted to use it for something bigger than myself- as a fundraiser for something.  And then I immediately knew what I wanted to fundraise for.

Over a year and a half ago, I began working with two young women with Friedreich's Ataxia, as a part time job to supplement my AmeriCorps living stipend (and because I love working with people with physical disabilities).  FA is similar to Muscular Dystrophy, in that it affects your fine motor skills, and eventually the function of your major organs.  This part time job became so much more, and to say that I have enjoyed working with Sara and Laura would be an understatement.  I feel connected to the Ferrarone family in ways I never thought possible.  Sara and Laura rapidly became my friends, and working with them brought me fulfillment in days that were long and chaotic at my other jobs.  I felt such pride when I could make life easier for them, or make them laugh, which wasn't difficult, but still.

That's not to say it hasn't been hard.  Watching these two lovely young ladies rapidly lose their physical abilities at 22 and 26 has been one of the most painful things I've ever experienced.  To sit with someone night after night and watch them struggle to feel the straw in their mouth to drink, or to watch them not be able to control the muscles in their neck to talk to you is extremely difficult and frustrating.  When I started working with them, both Sara and Laura had abilities that they lost within a few months of that time.  Sara was farther along in the disease, and declined rapidly.  Despite these difficulties, both young ladies exhibited courage and strength that I will never know.  Their parents, Bob and Margaret, have not lost their strength or perseverance, and have done everything in their power to give them the best lives possible.  This attitude on life is admirable and infectious.

 

This past Thanksgiving, I left with my family to visit my grandfather in South Carolina.  As we were leaving to return home, I got one of the worst phone calls I've ever had.  It was Margaret, calling to tell me that there had been sudden complications in the health of Sara, who had been feeling very ill for quite some time.  Sara made the courageous decision to forego the risky surgery, and instead pass away peacefully.  I tried, and failed, to keep composure on the phone, and then cried for the next 14 hours in the car.  I felt like my pain couldn't be contained in the tiny car, and would explode over the highway in a wave of grief.

The following week, I worked with Laura every night, taking her to the wake, and comforting her and the family, as they simultaneously were providing comfort to me.  I could go on and on about how painful this time was for me, but still the pain of their family was something I can't imagine, or ever want to.  They have known a sorrow that no one should ever have to experience in their life.

 

The situation is difficult, and often hard to process.  But the legacy of hope and faith is still strong within this family.

I would like nothing more than for the younger daughter to have a cure and be able to find peace.  That being said, I was drawn to FARA, a nonprofit organization that is researching a cure for FA.  This will be my first event as a part of Team FARA, and I am raising money for them as I train.  My goal is to have at least $750 by the time of the race on April 28^th, and my aim is to not have to stop or walk during the half marathon.  I’m not looking to set any land speed records, but I will be pushing myself to try to finish in about two hours.  My friend Tyler and I have many, many different motives for running (some more noble or hilarious than others), but during the difficult times in my training and in the race, I will be thinking of the girls, and how much they would give to be able to run any of the 13 miles in the race. 

Peace, love, and thanks, Elizabeth

Elizabeth's Team FARA Page

St. Patrick's Day 4 Miler - Team Kelly Alfieri

When my cousin's son, Christopher, was 10 years-old, he was diagnosed with FA. When she told me I said, "we need to fight this". I told myself that I was going to do something to help this cause. It is not fair for children and adults to have to deal with this. I love my cousin like a sister. Christopher is like a nephew to me and I couldn't just sit and do nothing.

I did some research on FA and that is how I found FARA. The website is fantastic.  I love that it provides information on current studies of FA research as well as patient and family resources. After I read over the website, I decided to join Team FARA. 

My first race for team FARA was just a of couple days ago, on March 16, 2013. It is a wonderful feeling to know that I am running to help Christopher and FARA. I'm so flattered that so many generous people have supported me in my efforts. 

I plan to continue to run for Team FARA and help raise awareness of Friedreich's Ataxia. I hope and pray that someday, FARA will find a cure for FA!

- Kelly Alfieri 

Kelly's Team FARA Personal Page

Pedal for Phil

Team Pedal for Phil participated in Team FARA – Tour de Palm Springs 2013. Pedal for Phil fundraised over $8,000 for FA Research on behalf of Phil Singer.  Check out this great video about their Team FARA experience! Video created by Rowena Leong Singer.

Team Pedal for Phil Video 

Team Chelsea

In Palm Springs 2013 we ride in honor of Chelsea Lane

There are several active clinical trials around the world now and a lot of basic science and translational science in the pipeline to keep fueling trials until we cross that finish line to treatments and a cure.  If you visit FARA’s treatment pipeline (http://curefa.org/pipeline.html), you will see numerous approaches to treatment for FA in development- a stark contrast to when FARA started and there were no trials and very little research in FA.  FARA has spent the last 15 years gaining momentum in science, fundraising and partnerships, but it had to start somewhere.

When Ron and Raychel Bartek started FARA, they met Sandy and Steve Lane and their beautiful five year old daughter Chelsea who had been just diagnosed with FA. As Sandy joined the FARA Board, Chelsea went to work inspiring her home community to get involved in raising funds.  Chelsea's huge smile and engaging, sweet personality inspired hundreds of people to participate in the Lane FAmily's Walk for Hope and a Cure in Orange, CA.  Chelsea won the hearts of people at her school, local merchants, politicians, and celebrities. This annual event from 2000 - 2005 formed the bedrock of FARA's fundraising program, raising over $700,000, and funded a significant amount of FARA’s early scientific work bringing us closer to the treatment era for FA.   

Sadly, we lost Chelsea in early January 2013.  While we grieve her loss, we celebrate her legacy and her spirit by dedicating Team FARA’s ride in the Tour de Palm Springs on Saturday, February 9 to Chelsea.  Team FARA will ride more than 30 people strong and has raised $27,000 (and counting)!  During our ride, each team member will don a Team Chelsea placard in tribute to the work Chelsea has done and inspires us to do to get us all closer to the finish line of treatments and a cure.