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rideATAXIA Europe- Le Peloton de L’Espoir

rideATAXIA’s First International Adventure

raEuro

"The strength of the team is each individual member. The strength of each member is the team." --Phil Jackson


ON JULY 1-8, 2017, 21 riders from the United States and 30 riders from France will come together for a 350 mile ride from Strasbourg France to Lentilly, France (a suburb of Lyon, France) in rideATAXIA’s first venture overseas – rideATAXIA Europe, Le Peloton de l’Espoir (The Peloton of Hope). The event will also include a single day ride with multiple route lengths in Lentilly.

rideATAXIA started with long-distance multi-day rides in ’07, ’08, and ’09. However, for the past 7 years, the rideATAXIA program has consisted of single day rides in locations across the US with multiple route lengths. The goal has been to involve as many people as possible; uniting people with FA and able bodied cyclists in a healthy and active way to advance research through fundraising. “I’m excited to do another multi-day ride. The bond built between teammates that forms during events is pretty incredible.” says Kyle Bryant, founder and Director of rideATAXIA for FARA.

rideATAXIA Europe- Le Peloton de L’Espoir aims to unite the patient community in an empowering physical activity, draw attention to opportunities to be involved in clinical research through registration in the Global FA Patient Registry and raise funds for an Association Francaise Ataxia de Fredreich (AFAF) and FARA collaborative research grant. Le Peloton de l’Espoir will also strive to spread FA awareness in France and beyond.

The idea for Le Peloton de l’Espoir started several years ago as a conversation between Kyle and French FA researcher Dr. Helene Puccio. They saw the opportunity to unite two strong FA communities in an effort to raise awareness and funds for research. This idea started to come to life when Dr. Puccio recruited her husband, Benjamin, colleague Francois Piguet and an FA parent, Anabella Saraiva to the team. Benjamin has spent countless hours organizing all the logistics for the ride between Strasbourg and Lentilly- the route, the lodging, the rental bikes. Francois has organized many of the activities for the starting event at IGBMC as well as promotion of the event and creative ways to teach youth and the public about Le Peloton and FA. Anabella, a tireless advocate for the FA community, is the ride director for all aspects of the community ride in Lentilly.

Not unlike our everyday team, in pursuit of treatments and a cure for FA, Le Peloton de l’Espoir is comprised of people with FA, their family, our friends and even some FA researchers. We’d like to introduce you to some of the American riders (posted below). In these posts, they share a little about themselves and their motivation for riding. We look forward to meeting our French teammates upon our arrival in France, and we plan to introduce you to some of them via the rideATAXIA Facebook page. Please be sure to follow our journey there. Everyone brings a unique strength and skill set to the team- qualities that we will rely on when the days are hot, or the climb is steep, or the path before us isn't quite clear. With several unknowns before us- the language, the weather, the terrain, this journey will be an adventure- one made richer by the people at our sides.

Meet some of the US Team:
 Bart Rupel

Bart RupelHometown: Born in New York City, but raised in the Bay Area since the age of 2.
Current Location: Santa Clara, CA resident for 48 years
Age: 53
Occupation: Mechanical Engineer for most of my career, a Materials and Process Engineer for the last 11 years

About you in your own words: I'm an engineer because I like to tinker and solve problems. Biking as a hobby suits me because of all the interesting mechanical bits. I can take my bike completely apart and put it back together and have it still work! I'm a bit of an introvert, but I work on that, and not nearly the wallflower that I was years ago ;)

My son Matt was diagnosed with FA a bit over 13 years ago, he's now 26. My friends and family started doing fundraisers for FA research almost immediately it seemed. My wife Brenda and I also have a 23 year old daughter, Katie. She is an FA carrier, like her parents, and lives and works in San Francisco.

Matt's FA is pretty serious these days. He's recovering from a bought of sepsis that nearly killed him and he's struggling to get his strength back to where it was a month ago. Fortunately he is improving.

I met Kyle after his ride to Nashville and I rode with him to Las Vegas and almost every ride on the West Coast ever since. In the past two years I've become more serious about my riding, not crazy serious like some of my friends, but I typically do a couple of 30 to 40 mile rides with 1500 to 4000 feet of climbing in each ride per week. I don't like to ride really long rides though. Centuries are not my thing. I say that I like to ride, but I don't love it. Three to four hours is enough. I do know from previous multi day rides that I should come back from this ride in even better shape than when I started.

Tell us one thing you know about Friedreich's ataxia (FA) without using the internet. One thing about FA: FA can be very dangerous for the heart, both physically and emotionally. It can also lead to great friendships.

What are you looking forward to about Le Peloton de l'Espoir? I'm looking forward to making new friends, sharing good times on and off the bike, eating good food, drinking good wine, and coming home with amazing stories. I hope this ride inspires more fundraising in Europe and around the world so that we can accelerate the discovery of a cure for FA.

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Brian GriggsBrian Griggs

Hometown/Current Location: Southern Utah near Zion National Park. I have lived and worked in Alaska for more than 22 years.

About you in your own words. Beware of my obsession with Bicycles, I have a tendency to allow them to occupy my thoughts, plans and dreams.

My daughter Liberty was diagnosed with FA when she was 10 yrs old. Currently she is 16 years old. Most days she rides her recumbent trike and practices walking in an effort to stay as fit and strong as possible so that she can continue to accomplish a growing list of goals and adventures she plans to experience.

Please like and follow Liberty on FB on her page "Give me Liberty to Make a Difference".

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Diane Bryant

Diane BryantHometown: Vancouver, Washington State
Current Location: Northern California
Age: 65
Occupation: I just retired after 15 years of teaching 5 and 6 year olds at a Montessori public school

About you in your own words. Kyle Bryant is my son. I have another son, Collin and wife Jina, 7 year old Aubrey and 2 year old Keller.

I am married to Mike Bryant. 43 years. I like to knit and read. I am currently reading The Woman in Cabin 10 by
Ruth Ware.

Tell us one thing you know about Friedreich's ataxia (FA) without using the internet. My son, KYLE, has Friedreich's ataxia.

What are you looking forward to about Le Peloton de l'Espoir? I am looking forward to the ride in France. I want to learn about French culture and people.

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Gary BrannanGary Brannan

Hometown: Minneapolis, MN
Current Location: Danville, CA
Age: 69
Occupation: Retired, my occupation, which totalled 36 years, was finding locations for Safeway stores and Ross Dress for Less stores around the USA.

Tell us one thing you know about Friedreich's ataxia (FA) without using the internet. It is a degenerative disease causing difficulty moving the legs and arms and can impair speech.

What are you looking forward to about Le Peloton de l'Espoir? Participating with people affected by FA and those riding to support a cure for FA.

 

 

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Lee Goldman

Lee GoldmanHometown: Idaho Falls, Idaho
Current Location: Danville, CA
Age: 76
Occupation: retired from auto repair business, tire/brake shop, muffler shop, service station.

About you in your own words: I enjoy almost anything outdoors - waterski, snowski, bike - roadie and mountain, fishing and hunting, and my wife says I'm fun to be around.

Tell us one thing you know about Friedreich's ataxia (FA) without using the internet. What I know comes from my association with the Bryant family. It takes a lot of perseverance and courage to push through all the challenges. And along with them, I have hope there will be a cure soon.

What are you looking forward to about Le Peloton de l'Espoir? The friendship, the challenge of consecutive days of riding, doing this in a part of the world I've never seen before, making friends along the way, and accomplishing the goal of bringing awareness and exposure to this disease.

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Melissa & Matt Lazinski

Hometown: St. Petersburg, FL & ChicagoMatt Melissa Lazinski, IL
Current Location: Palm Harbor, FL
Age: 40 & 41
Occupation: We are both Physical Therapists & Professors of Physical Therapy

About you in your own words: Biking is one of our favorite hobbies, so we are so happy to go international with it for FARA. We met Kyle Bryant about 7 years ago at the FARA Energy Ball in Tampa, FL. If you haven't heard of it before, it is an intimate gathering of a few hundred people. So, we were at the Energy Ball when someone told us that Kyle was a cyclist too. We hunted him down and fought off crowds of people to meet him. Then we followed him around for the rest of the night. We became Kyle groupies instantly. He made the mistake of telling us about RideAtaxia. So we started following him to those too. We go to the Ride Ataxia in Clermont (Orlando) each year. Our kids (Nate & Jake) have even joined in for the past few years, riding and volunteeering at the event. We stalked him as a family at the premier of The Ataxian in Los Angeles. When Someone let it slip that Kyle was going to France to ride, we jumped at the opportunity. 8 days of Kyle!

Besides Kyle, we have met many remarkable people in the FARA family and felt humble in their presence. We have formed many great friendships. While our own families have been spared the burden of FA, we share in the determination and hope of the FARA family.

Tell us one thing you know about Friedreich's ataxia (FA) without using the internet. FA affects a cell's ability to produce energy.

What are you looking forward to about Le Peloton de l'Espoir? Meeting our all our team mates and eating lots of cheese and baguettes! But in all seriousness, this is an incredible opportunity to represent an organization that we really believe in, raise awareness, and share it with the world!

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Michael Bryant

Mike BryantHometown: Born in Great Falls Montana grew up in Oroville California
Current Location: Grass valley California
Age: 65
Occupation: Retired from Insurance Broker career

About you in your own words. Married for 43 years to my high school sweetheart. Two sons, Kyle and Collin. Collin and his wife Jina take care of my two grandchildren Aubrey 7, and Keller 2. Looking forward to retirement, playing with the grand kids and supporting Kyle where ever that may take us.

Tell us one thing you know about Friedreich's ataxia (FA) without using the internet. FA sucks and we need to do whatever we can to eliminate it in all our lives.

What are you looking forward to about Le Peloton de l'Espoir? I am looking forward to meeting new friends and enjoying the adventure with old friends and family. Look out France here we come.

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Rob WilsonRob Wilson

Hometown: Hartsdale, NY (a suburb of New York City)
Current Location: Wynnewood, PA (a suburb of Philadelphia)
Age: 58
Occupation: Physician-Scientist

About you in your own words: I’m married, with two sons: Thomas, who turns 30 this year, and Ian, who just turned 26. My wife, Amy, is a physician and the Director of Occupational Medicine for the University of Pennsylvania Health System. In college I majored in Music, staying a fifth year to study composition. I then entered the MD/PhD program at the University of Pennsylvania, where I met Amy. After the MD/PhD program, I completed a residency in Clinical Pathology, post-doctoral research in the Howard Hughes Medical Institute, and a fellowship in Transfusion Medicine, before joining the faculty of the University of Pennsylvania. I’m a practicing molecular genetic pathologist and I have a research lab at the Children’s Hospital of Philadelphia.

I started studying FA in the late 1990s. One day I got a call from a guy named Ron Bartek, asking me to be the Scientific Director of a new organization, the Friedreich’s Ataxia Research Alliance. He was very persuasive! I was the primary organizer of the first three international FA conferences, all held at the NIH. I stepped down as Scientific Director of FARA but remain on the Scientific Advisory Board. With Dave Lynch, I’m co-director of the Center for FA Research at the Children’s Hospital of Philadelphia.

Tell us one thing you know about Friedreich's ataxia (FA) without using the internet. Frataxin functions in the formation of “iron-sulfur clusters,” which are important for the function of many proteins in the cell. Although many of the signs and symptoms of FA can be explained by mitochondrial dysfunction, decreased frataxin also affects the function of many non-mitochondrial proteins. In the last couple of years my lab has been very interested in alterations in critical cellular signaling pathways in FA and how they might be corrected pharmacologically.

What are you looking forward to about Le Peloton de l'Espoir? First, surviving. Like many ex-athletes (soccer, basketball, and baseball in my case), my knees are pretty much shot. But I can still bike. Whether I’ve trained enough to get through the whole thing is anybody’s guess, but I will give it my all.

Second, camaraderie. There’s nothing like joining a committed group, with common goals, to take on a real challenge. (Biking 400 miles in a week definitely qualifies as a real challenge!)

Third, raising awareness (and funds). As a research scientist, I’m only too cognizant of what it takes to do laboratory research. Drug discovery and development are very difficult, with many pitfalls, but because we have many initiatives, I’ve never been more optimistic.

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Rachel Main

Location: San Francisco, CA
Age: 41
Occupation: Family Support Coordinator for the Alzheimer's Association

About you in your own words. Both my younger brother, Adam, and younger sister, Sarah, were diagnosed with Friedreich's Ataxia in adolescence. Although living with FA is a daily challenge, Sarah lives with her husband and two children in Atlanta, GA. Adam left us on his 28th birthday, after celebrating his upcoming university graduation and rock concert promotion. I ride for Adam and Sarah, as well as all the other amazing individuals I've met through rideATAXIA who are affected by this dreadful disease. I love the outdoors, swimming, biking, and jogging. Can't wait to see the sights in France, and make new friends.

Tell us one thing you know about Friedreich's ataxia (FA) without using the internet. It's crummy and needs a cure!

What are you looking forward to about Le Peloton de l'Espoir? Good sights, new friendships, and hope in the search for a FA cure.


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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