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FARAFARA Cure FA
rideATAXIA MaprideATAXIA CHICAGO rideATAXIA PHILLY rideATAXIA ORLANDO rideATAXIA DALLAS rideATAXIA NORCAL rideATAXIA SOCAL

 

rideATAXIA Blog

In January 2007, rideAtaxia was born when Kyle Bryant and his father began their 2,500 mile, 60 day cycling journey from San Diego to Memphis, TN to raise awareness and funds for FA research. Now functioning as a program of the Friedreich’s Ataxia Research Alliance (FARA), rideATAXIA offers single day, challenging and family fun bike rides at locations all across the USA. From firsthand accounts of Kyle’s inaugural journey to the most recent news about our annual bike rides, the evolution of rideAtaxia is chronicled in this blog.

 

Ride Ataxia 2013 Dates

 

2012 was an incredibly successful year with two new locations, a total of 6 rides, 2,230 participants and over $500,000 in fundraising.

 

Just as important, or perhaps even more important is the record number of people we had riding trikes and handcycles, many of whom did not know it was possible to move so fast and far under their own power.

 

As we look to carry that momentum forward to 2013 we have set the dates and can't wait to see you there.

 

Here are the 2013 dates:

  • Dallas - March 23
  • NorCal - June 1
  • Chicago - July 21
  • Portland - Late September
  • Philadelphia - October 13
  • Orlando - November 3

 

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At NorCal 2012 We Ride For Phillip

Why do we ride?
We ride to build strength. We ride to see the countryside. We ride to give ourselves a free pass to chow down at the rest stops and on Outback food at lunch.
We ride because we love someone with Friedreich's ataxia.
We ride because we have Friedreich's ataxia.
We ride to connect with old friends. We ride to remember old friends. We ride for different reasons and for the same reason --- WE RIDE TO CURE FA!

On May 5, I will ride for myself, for my family, for all my friends living with FA, and for my friend I lost to FA. The third annual Ride Ataxia Nor Cal is dedicated to Phillip Bennett. Phillip's close friend Jamie Richards wrote at his passing in March 2011: ‎"Too many of us wait. And wait, and wait. Someday, we tell ourselves, we'll say it, start it, try it, do it or complete it. Phillip didn't wait. He swam and skied. He rode roller coasters. He rappelled and river rafted. He even went spelunking. He made friends. He laughed. He partied. He crammed 72 years of life into 27."

Phil - We miss you. We continue to think of you and we will ride for you.

 

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Shanna Armstrong Joins The Team!

Le tour Ultime was a 2500 mile race on the same course as Le Tour De France.  The difference is that Le Tour Ultime was nonstop, so rather than stopping overnight after each stage racers pedaled through long days and nights toward the finish line.  This race started in 2006 and was cancelled starting in 2008 because many of the winners decided it was too hard.

Race Across America (RAAM) is a non stop 3,000+ mile race from West Coast to East Coast, with over 100,000 ft of climbing.  RAAM is regarded as the World's Toughest Cycling Event.

The Ultraman Championship is a double Ironman and then some.  The race includes a 6.2 mile swim, 261.4 mile cross country bike ride, and a 52.4 mile ultra-marathon run.

Completing any one of these races is a superhuman feat and a lifelong goal for many people.  Some might even compare curing FA to the accomplishment of completing one of these races.

An amazing person named Shanna Armstrong has joined the FARA/Ride Ataxia team and her goal is to cure this disease.  Shanna is super human.  Some say she is the greatest female ultra-athlete on the planet.  She has not only completed all of the above events, she has several first place finishes under her belt.

Shanna's Resume includes:

  • 1st place in Le Tour Ultime, co-ed pision 2007
  • 2-time RAAM Champion, 2005, 2006
  • 6-time Ultraman Champion, 2003, 2004, 2005, 2006, 2007, 2009. Record: Second fastest Women's swim. Record: Third fastest Women's overall time.

Shanna is a certified triathlon coach, physical therapist, and massage therapist.  Shanna will ride with us in Denton, TX  on March 24 and will be available for questions and conversation about nutrition, training, goal setting, and anything extreme.

 

Shanna has experience in conquering the biggest milestones in life and now she has set her sights on a cure for FA.

Come ride with us!  See you there!

 

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Ride Ataxia Exceeds $1 Million In Funded Research

Ride Ataxia is making a big impact toward treatments for FA by directly funding research. When every day is critical to each of us it is important to recognize milestones as they pass to keep ourselves motivated and pushing forward as fast as possible.

The new FARA newsletter will be hitting mailboxes over the next couple of weeks and there is one section of special interest to anyone who has supported Ride Ataxia either as a donor or a participant.  The section is at the end of the Update on FARA's Research Grant Program and it is called Recently Awarded Named Grants.  This section includes the descriptions of two research grants which put the total funded research for Ride Ataxia at a staggering $1.2 million since 2007. The first  is named The Phillip Bennett Translational Research Award in honor of one of the original pioneers of FA research fundraising. This award is made possible with funds from Ride Ataxia NorCal and the Phillip Bennett Memorial Fund. The second award is called The Kyle Bryant Translational Research Award.  The title and description of the two newly awarded grants is at the bottom of this post.

There are a couple of reasons to be excited about these two specific grants.

  1. The Phillip Bennett Translational Research Award, given to Gino Cortopassi at UCDavis, is for the continuation of a project that started with funds from Ride Ataxia in 2009. Dr. Cortopassi has been hard at work and has produced some impressive results with his high throughput screening program in the last two years, and we want help advance his work towards the finish line. An additional exciting factor about Dr. Cortopassi's project is that he is looking at existing drugs that have already been approved for use in humans which carries significant potential to reduce the development time to clinical trials in FA.
  2. Dr.Sarsero's project is a new approach to FA which aims to fix the root cause of the disease - a defective gene. Gene therapy is an area of research that FARA's scientific advisers have identified as a need because of the potential for a profoundly curative therapy.  Dr. Sarsero's research is part of the plan to fill that need.

Ride Ataxia funded grants have advanced three drug candidates in our treatment pipeline and will add new candidates in the near future. For a full list of all the other Ride Ataxia funded grants and progress updates please check: http://rideataxia.org/research.php. It is clear that Ride Ataxia has made a significant, tangible impact on advancing research. Further updates to these projects will be posted as they become available.

When Ride Ataxia originated with our first cross country trip in 2007 our goal was to raise $30,000. We had no idea where the money was going to come from, we just threw the goal out there and gave it our best. We raised $40,000 during that trip and were amazed by the generosity of our friends and family.  Ride Ataxia provided a platform from which to talk about FA with people who cared about us and they responded with immense generosity. Over the past few years Ride Ataxia has provided the platform for thousands of people to talk about FA from a place of pride and empowerment rather than a place of fear and helplessness.

We reach our goals because of collaboration from friends, family, cycling enthusiasts and sponsors; the most significant of which is the steadfast support of Outback Steakhouse.

As we cross the $1 million mark we think about where we have come from with our sights fixed on the finishline: treatments and a cure for FA.

Recently awarded grants:

Phillip Bennett Translational Research Award
Principal Investigator: Dr. Gino Cortopassi,
University of California, Davis

Repurposing existing approved drugs for FRDA therapy using a novel high-throughput screening assay and a library of 1640 drugs that have already been approved for use in humans, Dr. Cortopassi identified 40 drugs that protect FRDA patient cells from death. The screening assay is based on the sensitivity of FRDA fibroblasts to the thiol oxidant diamide. The goal of this project is to determine the mechanism of action of these protective drugs. Dr. Cortopassi will also examine their relative potency and their efficacy in cell and animal models in preparation for clinical testing in humans. Because these drugs have already been approved by the FDA for other purposes, this “repurposing” approach has substantial potential to reduce the lag time between laboratory testing in cell and animal models and approval of the drug as a treatment for FRDA. Thus, determining the mechanism and efficacy of these drugs is a top priority, because of the potential for rapid translation to FRDA patients.

Kyle Bryant Translational Research Award
Principal Investigator: Dr. Joseph Sarsero, Murdoch
Children’s Research Institute, Melbourne, Australia

Correction of FRDA iPS cells by non-viral gene therapy.
FRDA is an inherited progressive disorder of the nervous system and muscles that results in the inability to coordinate voluntary muscle movements. Improper heart function is also a common and life-threatening condition of the disease. The genetic defect that causes FRDA results in reduced levels of an essential protein termed frataxin in all cells of the body. Stem cell therapy has the potential to repair or replace damaged tissues and restore organ function in inpiduals with FRDA. Major advances in stem cell technologies have led to the development of ‘embryoniclike cells’ from adult human tissue. These cells, known as induced-pluripotent stem (iPS) cells, have essentially the same properties as embryonic stem cells, and thus can be used to derive any mature cell type. Prior to the transplantation of nerves or heart cells derived from FRDA iPS cells, it will be necessary to restore frataxin protein to levels compatible with normal cell function. In this project Dr. Sarsero and his collaborator, Dr. Mirella Dottori, propose a means to correct the defect inherent in FRDA iPS cells by a gene therapy approach that will restore normal FRDA gene expression and does not leave any ‘genetic scars’ in the cells. The strategy addresses major safety concerns for the clinical use of iPS cells and should facilitate compliance with regulatory agency requirements for the approval of the use these cells in transplantation medicine.

 

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Ride Ataxia Orlando

Building on the momentum we established with our ride in Tampa, FL last year, the Orlando location will provide a well supported, challenging ride for all riders.  The Orlando ride will feature 16, 25, and 50 mile routes allowing participation from all ability levels.  All routes will feature strong SAG support, fully stocked rest stops, and what has been called "The best post ride food ever" provided by Outback Steakhouse and Carrabba's Italian Grill.  All routes will start and end at Waterfront Park in Clermont, FL.

 

  • The 16 mile route will take place on the South Lake Trail heading east with a rest stop and turn around point at mile 8.  This out-and-back route will give riders the option to ride a shorter length if they choose. View the 16 mile route here: http://rideataxia.org/orlando/images/16map.png.
  • The 25 mile route will travel around Lake Minneola, out to Groveland to our first rest stop at Lake David Park and back.  This route will include varied traffic conditions and is recommended for intermediate and advanced riders.  View the 25 mile route here: http://rideataxia.org/orlando/images/25map.png.
  • The 50 mile route will travel around lake Minneola, out to Groveland, up through Mascotte, around through Ferndale and back to Clermont.  This route will also include varied traffic conditions and is recommended for advanced riders only.  View the 50 mile route here: http://rideataxia.org/orlando/images/50map.png.

 

The Orlando location will provide access to one of the country's premier cycling atmospheres and will allow us to partner with strong teams from Outback Steakhouse, Carrabba's Italian Grill, and Catrike.  The ride will also receive support from Coca-Cola and Brown and Caldwell.

 

We look forward to seeing you on the road or trail for Ride Ataxia Orlando on November 6, 2011.

 

For all the details and to register please visit rideataxia.org/orlando.

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