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

 

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.

 

Brilliant Heart Research

Dr. Subha Raman is one of Ohio State  University's best and brightest researchers, in fact in 2010 Ohio State named Dr. Raman their Early Career Investigator Of The Year.

Recently Dr. Raman has proven to be one of FARA's most valuable assets as well.  In 2008 Subha received a Kyle Bryant Translational Research Award (KBTRA) to begin her research into the FA heart through Cardiac MRI (the funds for the KBTRA come from Ride Ataxia events!).  Dr. Raman's paper (Impaired myocardial perfusion and fibrosis in Friedreich's ataxia: a mitochondrial cardiomyopathy with metabolic syndrome) was recently published in the European Heart Journal and she has applied for more funding from the National Institutes of Health so she can expand her study to include more patients.  The goal is to make Dr. Raman's techniques part of the standard care protocol for all FA patients.  We could not be more proud of the work Dr. Raman is doing.  This is a great example of the power of FARA and Ride Ataxia.

It is known that heart complications (cardiomyopathy) are the leading cause of death for FA patients.  Dr. Raman's research aims to catch heart problems early before they become life threatening using a cardiac MRI which can take very clear images of the heart so they can be...I'll just let her tell you:

 

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7th Annual Catrike Rally

Last weekend I visited some friends at the 7th Annual Catrike Rally and Factory Tour.

All people who own a Catrike (and any other brand of trike or recumbent or anything other human powered vehicle!) were invited to come out to Winter Garden, FL for a ride and a tour of the amazing Catrike factory.  One of the many great things about Catrikes is that they are made right here in the US and once a year Catrike invites the public to come check out their manufacturing facility where they bend, weld, and paint aluminum into their outstanding trikes.

On Saturday morning we all (200 people on trikes) met at a park and lined up in 2 different groups for different ride lengths; 15 and 30 miles.  It was quite a sight:


When we took off on  the ride it was a little overwhelming (in a good way) because I had never been among more than 2 or 3 trikes before and now I was riding in a group of 200!



After the ride we took a tour of the factory and learned the history of Catrike.  Right before the tour Paulo (the inventor and CEO of Catrike) made a special presentation.  Paulo presented a brand new Catrike Expedition to one of his employees, Sherry, who has been with Catrike as a welder since the very beginning, 10 years.  Sherry has built many, many trikes!

After the presentation we toured the facttory and learned just how these machines are made.  This is a 700 frame ready to be welded together:

 

That night Catrike held a reception with presentations from distinguished Catrike riders such as Mr. Giraldo and Bryan Ball from Bentrider.  I was lucky enough to be invited to share the Ride Ataxia story:

 



I highly recommend the Catrike Rally.  See you there next year!  http://catrike.com

 

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Top Fundraisers

Ride Ataxia events have funded $960,000 in FA research in the past 4 years.  The funding of this research is made possible by the efforts of each inpidual participant and volunteer.  

The top Ride Ataxia fundraisers for 2010 to date are:

  1. Margaret Ferrarone - Philly 2010 - $23,188
  2. Angela + Ricky Greene - NorCal 2010 - $10,865
  3. Ed + Lisa Ramsey - Tampa Bay 2010 - $6,775

The top fundraising teams are:

  1. Team Helms - NorCal 2010 - $23,229
  2. The Rupeleton - NorCal 2010 - $17,515
  3. Team Sam Bridgeman - NorCal 2010 - $15,591

Get on the list during Ride Ataxia Southern California on December 4-5, 2010: http://rideataxia.org/socal

 

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Ride Ataxia Southern California - Sunsets and Research

This is the first time for Ride Ataxia in Southern California.  The ride will take place on December 4 and 5, 2010 traveling 80 miles in two days from Long Beach, CA to Dana Point, CA and back.

Bring your camera because the route travels right down the coastline with the pacific ocean in view the entire time.  View the route here: http://ridewithgps.com/routes/178490

The ride will be fully supported with volunteers to haul your overnight gear to the hotel in Dana Point and then back to Long Beach the next day and sag vehicles roving the course to provide safety and help with flat tires and other maintenance issues.  Rest stops will be fully stocked with everything you need including lots of home baked breads and muffins much like the experience at Ride Ataxia Philadelphia.

The ride also features a ten mile route to allow participation from all levels of riders.  The ten mile route will begin and end in Dana point not far from the first day finish of the 40 mile route.  View the 10 mile route here: http://ridewithgps.com/routes/202307.

Once in Dana Point, the riders will enjoy a dinner of ribs and all the fixins from Outback Steakhouse.  Dinner will be followed by a few presentations that represent the very reason for the ride - Research to treat and cure FA.  The presentations will include:

  • Dr. Susan Perlman from UCLA who will talk about the latest FA collaborative clinical trials at UCLA.
  • Dr. Giovanni Coppola from UCLA who will be speaking about genetic research in FA.
  • Drs Ernest M Wright and Vladimir Kepe from UCLA who will be speaking about their work with biomarkers.
  • Dr. Liz Soragni from Scripps Research Institute who will be presenting on HDAC inhibitors and other new developments at the Scripps lab of Joel Gottesfeld.
  • Dr. Martin Thoolen from Edison Pharmaceuticals who will talk about improving mitochondrial function and energy production. 

As you can see the west coast is a powerhouse of FA research and this power will be represented at the SoCal ride.

The next day riders will ride 40 miles back up the coast to the finish line at Outback Steakhouse in Long Beach.

This is going to be a scenic and fun ride but it always comes back to one thing - raising money to find a treatment and a cure for FA.  Lets keep turning that crank!

To find out more and to register for the ride please visit http://rideataxia.org/socal.

 

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Ride Ataxia Philadelphia - A Huge Success!

The ride was a great success with 400 registered cyclists and over $125,000 raised to support FARA's mission- to treat and cure FA through research advancement. All of the routes were very tough but I know everyone proved something to themselves through participation i n this ride. Thirty of our FA families joined us on bikes and trikes, volunteering at tricky turns, and cheering along the route- marking the day as one of camaraderie and personal triumph. FARA is grateful to Outback Steakhouse for helping us to make Ride Ataxia a truly great event. In addition to Outback's support in ride planning, Outback Steakhouse, Carrabba's Italian Grill, and Bonefish Grill generously donated their time, talent and food to treat participants and guests to a first rate meal following the ride.

The weekend started with pre-registration at Outback Steakhouse where we all gathered and participants could pick up their registration packets so they would not have to find a place for all the great stuff from the bags during the morning of the ride!

That night a group of us gathered to honor Mary Brown and Blair Desaw for the 2010 FARA Friend and Ally Award.  Blair handles all the web maintenance for curefa.org and rideataxia.org.  Mary is the administrator of our Facebook page.  Both peeople spend countless hours making sure FARA communicates well with our community and with the general public.  It will take a community to cure this disease and these two are playing a key role in creating that community!

 

Ride day started early before the sun came up as we set up the park and drove the course to make sure our directional markings were accurate.  It was freezing cold that morning!



It started warming up a bit and registration was smooth and orderly as people started showing up and everyone got suited up and ready for a great ride.

The 50 mile ride took off at around 830am with a huge crowd of cyclists.

 

 


The 25 miler took off at 915am and the 10 miler left at around 10am.  All of the routes were very difficult with nonstop hills which challenged every single participant.  There were several hand cycles and trikes on the road which were propelled by the bodies and hearts of Ataxian Athletes one of which was Sam Bode who trained for months to be able to complete this ride alongside her many friends and supporters.

One of the other Ataxian Athletes was Nick Carbone who was riding his new Top End Force handcycle that he received through FARA's 2010 Ataxian Athlete Initiative (AAI).

After the ride, all of the 400 participants enjoyed a huge spread from three of the best restaurants in the business.  Outback Steakhouse, Carrabba's Italian Grill, and Bonefish Grill were there to spoil us with tasty treats after a tough ride.



The afternoon also included something for everyone with race cars, fire engines, clowns, face painting and massage therapy.

 

Everyone had an incredible time and we raised a lot of money for an important cause. Below is a little about that cause.  We hope to see you next year!

Once again, thank You to our generous sponsors!

         Presenting Sponsor: Outback Steakhouse

        Headline Sponsors: Carrabba's Italian Grill and Bonefish 
        Grill

        Rest Stop Sponsors: Hank's Beverages, Allied Beverage,
        F&F Mechanical, and Sunbelt Coastal Produce.

Special thanks to Bikesport, Tri-County Bikes and Spinners for event SAG

Since FARA's incorporation in 1998, participation in events like Ride Ataxia have supported research resulting in the fundamental understanding of what causes Friedreich's ataxia. While the development of treatments is a labor intensive and costly process, FARA prides itself on facilitating this important work with strategic funding and collaboration. Specifically, FARA has awarded 8 research grants from Ride Ataxia fundraising over the past 4 years, totaling $960,000 in funding for research. All of these grants have supported research with a direct link to advancing treatments; testing drugs in the laboratory, developing cell models that allow us to discover and test new compounds, clinical research such as testing and validating new biomarkers and clinical measures and trials. The two most recent grants were just awarded this month. One is for a clinical trial, a pilot study of a drug that has shown encouraging results in laboratory tests, and the other is for the development of a high throughput screening assay that is needed to discover new drugs in the fight against Friedreich's ataxia.

 

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