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.

Team FARA & Outback Steakhouse in Tour de Palm Springs

Friday, February 8th  & Saturday, February 9th, 2013

  

Join Team FARA in Tour de Palm Springs 2013. Choose from 1, 5, 10, 15, 25, 55, 100 mile bike routes through the beautiful Palm Springs, CA while raising funds and awareness for FA research! 

This event sets the stage for a strong year of fundraising for Team FARA which has become a significant research funding effort. Last year Team FARA fundraised over $20,000 in Palm Springs, and we are looking forward to bringing everyone together to exceed that goal and have a great day of cycling.

How to Register 

All participants must first register for the ride at Tour de Palm Springs. The Ride takes place on Saturday, February 9th.  

Then click HERE to get the Team FARA details and  fundraising page.
Participants who raise $50 will receive Team FARA T-shirt
Participants who raise $500 will receive Team FARA - Cycling Jersey   

Looking to Volunteer? 

Team FARA is hoping to have a strong presence at the Tour de Palm Springs Expo taking place before and during the event- Friday, February 8th - Saturday, February 9th.We have several volunteer shifts available at our Team FARA booth. Come help spread awareness about FA! For more information and to sign-up go to Volunteer Registration

  

About Team FARA

Team FARA is made up of people around the globe who participate in endurance events on behalf of the Friedreich's Ataxia Research Alliance (FARA) with the goal of raising awareness and funds for FA research. Past Team FARA members have registered as individuals and groups in local marathons, ½ marathons, triathlons, ironman competitions, bike tours and 5K runs. While they are geographically dispersed, Team FARA is united with the same goal: to draw attention to FA through acts of physical endurance and to support the advancement of FA research towards treatments and a cure for FA.   

About FARA

FARA is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich's ataxia (FA).www.curefa.org

  

Join us in beautiful Palm Springs, CA for a fun day of cycling to benefit FA research!

See you there! 

-Jamie Young

  FARA Volunteer & Event Coordinator

NYC Marathon 2012

Congratulations to the Team FARA - NYC 2012 Marathon Team for their amazing efforts this year.  John Lagedrost, Margaret Hay, Lori Pitta, Steve Wisinski, Brian Schutter, and Patrick Hamill fundraised over $20,000 for FA research! While the NYC Marathon was canceled due to Sandy, they showed dedication to the cause by spreading awareness and continued fundraising. Many even went on to accomplish their goal and cross a finish line for Team FARA in a different location.

Brian Shutter – Manchester City Marathon – November 4th

John Lagedrost – Richmond Marathon - November 10th

Steve Wisinski – Veterans Marathon – November 10th

Lori Pitta – Philadelphia Marathon – November 18th

Please visit their Team FARA personal fundraising pages - and thank them for their efforts on behalf of FARA and the FA community!

Chicago Marathon- Viki Peer - October 7, 2012

So, I just ran in the Chicago Marathon and although I didn't run with anyone else, I didn't feel alone because I knew I was part of Team FARA.  I raised (and will continue to raise) money for FARA because of the Suttons.  Eight summers ago I volunteered at MDA summer camp in Illinois which is where I met the Suttons: Jamie, Jenn, and Casey who all have FA (their other brother Mike, although equally awesome, does not have FA). 

Over the years, Jenn and Jamie have become my pseudo sisters.  Camp after camp, party after party, matching tattoo after matching tattoo, from Vegas to Jasper, I love these girls with all of my heart.  Aside from being outrageously attractive, they are hilarious and possess unwavering strength against their day-to-day challenges. 

Next on my list of events to train for: duathlons and triathlons and maybe eventually, The Big Sur International Marathon.  Wherever I go & whatever I do, I will embrace being a member of Team FARA.  : )

Viki Peer

Team Adirondack - High Sierra Trail

Good Luck on Sunday to Team Adirondack!

“I feel Connected to FARA through Dlyan McDonnell and the McDonnell family in Glens Falls, NY.  We were neighbors growing up and were reconnected over the past few years when our dads started playing together in a band (The Marcabes).  He has inspired our Team to get out and do something for FARA; this will be Team Adirondack’s third year participating in the Team FARA Program.

We ended up going with the High Sierra Trail in CA to try to do something big and get people into the event and get them educated.  The trail is ~70miles long and traverses the highest point in the continental US (Mt Whitney 14,505 ft). I got hooked on the trail about a year and a half ago after reading about it in the Backpacker. To get ready, I run and bike regularly and do a good bit of hiking in the Adirondack Mountains.”

-Mike Delsignore

Team Adirondack

Support Team Adirondack by going to http://fara.kintera.org/faf/search/searchTeamPart.asp?ievent=1021537&lis=1&kntae1021537=0FA73B781DF844CB86A797DD3F0196A6&team=5108576

Cogan's Heroes Century Ride

My name is Patrick Cogan, and I have FA! When was I diagnosed? Funny story; I was symptomatic probably around 5-6, I was misdiagnosed at 11 and that mistake wasn’t corrected until my balance got so bad I caved and found a doctor. I was 25!

Immediately following my diagnosis I started putting the pieces together, all of the little ‘odd’ things started making sense; Coughing till I gag (out of nowhere), my legs flinching at night, my hands trembling trying to grab a beverage. It was like a light bulb in my life just was turned on, THEN, came the darkness. Walking issues, fatigue, the risk of heart disease…all the negative possibilities FA brings with it.

Flash back to 2009, I lost my dad to his battle with cancer. In response to this my siblings and I got our mom bike so she could ride out some of her grief. As a team and in his honor, they raised money and rode at the Livestrong charity ride in Pennsylvania in 2010.

In late 2010 I decided I wanted to start challenging myself. My first goal was to buy a recumbent trike. Check! Then I wanted to attempt the 25 mile ride at Livestrong. It hurt, but, I did it.

Then by happenstance and random events that started over a year earlier I applied for and was given a grant by FARA which gave me ‘Bumblebee’.

I applied for FARA’s Ataxian Athlete Initiative grant, never thinking I would actually be chosen. After approaching my friend/trainer, April, about writing a recommendation for me, the game was afoot. A few months later I was driving to a baseball game, and i got the call that would be the cornerstone of growing my cycling career. Not only did I receive the grant, but it covered the entire cost of the Catrike I was hoping to purchase.

That is when I decided go big!!

This disease tells us what we can’t do, what’s too hard, what we’ll need assistance for. I don’t like that! Don’t tell me what I can’t do because I’m only going to want it more and when I get it let the world know!!

SOOOO, that being said I have set athletic goals that I WILL achieve!

1. Century Ride 
2. Triathlon 
3. 75 miles at Livestrong Philly (wicked hilly)

On June 30th I will attempt and complete the first, the century! With my trainers, mother, sister, and another half dozen friends (including Richie Currier and Kyle Bryant) and family we will set out at 5:30 am on completing my first challenge! Not only will there be a dozen or so friends and family by my side but there will be even more waiting for us at my trainers house, our impromptu finish line for a celebration. It may take me 9 hours it may take 12. But; at the end of the day when I’m drinking an ice cold beverage it will be with a hundred miles behind me.