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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.

 

Discounts for NorCal riders!

Attention NorCal riders!  Looking for equipment deals in preparation for the ride on May 14?  For the entire week leading up to the ride, Ken's Bike and Ski will be offering our riders 15% off their lowest posted price on any cycling accessories, and 5% off their lowest posted price on any bike.

Check them out any time that week or we'll see you there for packet pickup May 13 from 4pm - 530pm!

To find out more about Ride Ataxia NorCal or to sign up or donate please visit the Ride Ataxia NorCal event website.

 

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Jerseys To Honor Phillip

Our jersey designer, Larry Phillips (Superlario) read the previous blog post just as the NorCal jerseys were being finished with printing.  He called me and told me that he was going to send the fabric for the collars back through the printer before they were assembled so they could print a memorial to Phillip on the inside Collar of each 2011 NorCal jersey.  I can't wait to get mine!

Here is the final design with the Phillip Bennett Memorial which will appear on the inside collar of the jersey.

Thank you to our Jersey Sponsors: Brown and Caldwell and Edison Pharmaceuticals.

Each participant who fundraises $500 or more will receive a jersey either in your goodie bag (available the day before the ride) or to be shipped after the ride (for those fundraisers who may not have met the jersey deadline).

To find out more about the ride in Davis, CA please visit the Ride Ataxia NorCal Website.

 

 

 

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Ride Ataxia NorCal - Dedicated to the Life of Phillip Bennett

Phillip Bennett is remembered for his confidence and passion for life.  He was focused on others as he was a leader in the charge to find a cure for FA.  For that reason we dedicate the 2011 Ride Ataxia NorCal to Phillip Bennett.

Phillip was not afraid of the future that this disease had planned, he lived moment by moment, squeezing every drop from life.  Phillip's close friend Jamie Richards writes ‎"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."

Phillip was the force behind Sunset On Friedreich's Ataxia (SOFA) which was a trail blazing effort, as it was the first substantial fundraiser dedicated strictly to FA research.  This community dinner/dance/auction raised a total of $200k during its reign and led the way for many other large fundraisers to follow.

Phillip was always thinking bigger and better for the cause and for his own life.  With reckless abandon and contagious enthusiasm he participated in activities such as Snowskiing:

 

Waterskiing:


Hang Gliding:



 


 

Phillip is sorely missed but he will never be forgotten.  He spent the last year and a half of his life writing his memoirs.  The book was incomplete when he passed away.  However Phillip's close friend Jamie Richards worked with Phil on the book and will finish it.  View Jamie's article about Phil here.

Each year Ride Ataxia funds several research grants with the proceeds from the rides.  This year the proceeds from the NorCal ride will be combined with Phillip's memorial fund.  This money will be used to fund the 2011 Phillip Bennett Translational Research Award.  There will be a request for proposals at the 4th International Friedriech's Ataxia Scientific Conference in Strasburg, France on May 5th and the funds will be distributed before the end of the year.

At Ride Ataxia NorCal we are riding for Phillip and his wish to end FA:

"Hope is a disability’s nemesis, and I hope a cure is found soon." - Phillip Bennett 7/8/1984 - 3/1/2011


To sign up for the ride and to help raise funds in honor of Phillip please visit the Ride Ataxia NorCal Website.

 

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Ride Ataxia Dallas - Everything is bigger in Texas!

The ride was a great success with 555 registered cyclists and over $170,000 raised to support FARA's mission- to treat and cure FA through research advancement.  This is our biggest turnout to date and it sets the stage for a record setting year for participation and fundraising with Ride Ataxia!

The wind was tough but it was a beautiful day for a ride. Twelve of our FA families joined us from, Oklahoma, Michigan, Oregon, Florida and neighboring towns in Texas, on bikes and trikes- marking the day as one of camaraderie and personal triumph.

FARA is grateful to Outback Steakhouse for making Ride Ataxia Dallas a truly great event. FARA is convinced that finding a cure requires collaboration from many different partners.  Outback's steadfast partnership has allowed FARA to direct more funds to research than ever before.  This year for the Dallas ride the Outback Steakhouse midwest region donated tips, held fundraising contests, and got creative with a result of a check for $124,500 for FA research.  We can't thank Outback enough for their undying support!




A few days before the ride began, we were featured in a Local newspaper; the Lewisville Leader. Check out the article here.

The day of the ride was beautiful!  It was sunny and warm with a little windy.  Crowds of cyclists showed up at registration at 7am.  A line formed but our volunteers kicked it into high gear and took care of the registration process in time to start the ride on time at 830.

 

The 50 mile riders took off first at 830am in staggered groups of 50 to 70 riders, spaced 10 minutes apart.  This was a safety measure to avoid sending a group of 200 riders onto the roads all at the same time.  It was overwhelming to see that many riders out to support the cause.





The 25 mile ride took off at 915 in the same fashion with slightly less participants. The 6 mile route took off at 1030am. The 6 mile route included some of our top fundraisers including the Newman family and the Dewitt family.

 

 

 

 

Out on the course the riders battled wind and tricky turns.  They stopped at three rest stops along the way; two of them were provided by Outback Steakhouse and featured Steak, Shrimp, and Ribs!  Wow, we were treated like Kings!

 

 

After the ride we all gathered at the amphitheater to enjoy a little music and dancing provided by our  volunteer DJ's and our youngsters.  The post ride celebration also included great Outback Steakhouse food and activities for the kids.

 

Toward the end of the afternoon we invited one of our funded researchers to come down and share his experience with the crowd.  Dr. Marek Napierala is originally from Poland and has been working on FA research in Houston (formerly at Texas A&M presently at MD Anderson) for several years.  In 2005 Marek was the recipient of FARA's New Investigator Award for his research on a high throughput drug screen and in 2009 Marek received the Kyle Bryant Translational Research Award to continue this research.  During his talk, Marek illustrated the power of FARA.  Marek said there are thousands of scientific research papers about Ataxia.  About 2/3 of them are on FA, so there is a lot of research and knowledge about this disease.  Marek reads all these papers and he always takes a peak at the acknowledgements.  He noted that FARA is listed as a funder in the acknowledgements more often than not.  Marek used this illustration to make the point that FARA is the leader in FA research advancement and FARA has pushed the field along at a very fast pace.  We cannot thank Marek enough for his hard work, his brilliant mind, and his commitment to FA research!

 

Our first ride in Dallas was an amazing, successful, rewarding experience!  We learned a lot about how to accommodate more riders as we grow bigger and bigger.  We will use this knowledge as we plan for next year!  We'll see you then!

 

Next Ride: Ride Ataxia NorCal, May 14, 2011

 

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NorCal 2011 Registration & Fundraising

We realize there are a few questions out there about registration and fundraising including: "How did the dallas Ride manage to get 555 riders!?" and "How did the Dallas Ride manage to fundraise $170,000!?"  

To quote FARA President, Ron Bartek: "Acting alone there is little we can accomplish.  Acting together there is very little we will NOT accomplish."  If we all put our shoulders to the wheel, we can combine our efforts to make a huge impact on research for this disease.  With that in mind we have created some instructions below to assist you in the registration and fundraising process for Ride Ataxia NorCal (It's pretty straight forward but this post may answer some specific questions).  I urge everyone to register and create your fundraising page and send out your link now so your donors will have time to dig deep by the time the ride rolls around.

1.  Register for the ride

  • Go to rideataxia.org/norcal
  • Click the button at the upper left that says "Register to Ride". This will take you to the Ride Ataxia NorCal Active.com registration page
  • At the Active.com registration page, click on the green button to the upper right that says "Register Now"
  • Pick your preferred ride length (If you are registering as a team of 10 to receive the discounted rate, you must choose a team Captain to create the team.  After the team has been created each inpidual team member can register and find the team under the name created by the captain, max is 10 per team for registration), read and agree to the waivers, fill in your date of birth and click "Agree and Continue"
  • Fill out all your information and answer the questions.  One of the questions is about purchasing a jersey.  You will receive a free jersey if you fundraise $500 or more (fundraising signup in step #2); in this case there is no need to order a jersey.  If you do not think you will reach $500 in fundraising and you still want a jersey you will need to order one for $75.  Scroll down and click "continue"
  • Fill in your payment information and click "Pay Now".  Note:  Your registration fee and jersey fee goes to FARA; the "Processing Fee" goes to active.com 

 

2.  Now that you have registered to ride, you need to create your personal fundraising page...There are two ways to do this. 

       a.  After you register to ride (step 1 above) you will receive two confirmation emails, one is a receipt for your payment and one has instructions on how to set up your fundraising page.  Follow the instructions in the email.

       b.  Follow the instructions below:

  • Go to rideataxia.org/norcal
  • Click the button at the upper left that says "Donate Now".  This will take you to the event fundraising site.
  • Click on the link in the uper left that says "register"
  • If you were a participant last year, choose "I already have an account", enter your email and password and then click next (please skip the next bullet).  If this is your first Ride Ataxia event choose "I need to create an account" (this is completely separate from the active.com registration) then click "next"
  • Fill in your information and click "next"
  • Set your fundraising goal, AIM HIGH! Enter your display name and click "next"
  • If you would like to create a team choose "Create a team".  If your friends have already created a team that you want to join. click "search for an existing team". Note:  Everyone on a team will all have an inpidual fundraising page with an inpidual total and those inpidual totals will be combined for the team total on the team page.  All team and inpidual totals will be combined on the event page. Note: there is no limit to the number of people you can have on a fundraising team.  If you registered 2 teams of 10 in step 1 above they can all be on the same team for fundraising. If you do not want to join a team choose "Do not join a team".  Click "next".
  • confirm your info and click "next".
  • you will receive a confirmation email which will take you to your page where you can upload a picture and write a personal message to your potential donors.  Here is an example: https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/ranorcal2011/inpidual.do?participationRef=968.0.347730459
  • copy the link for your page, paste it in an email or on facebook, twitter...tell everyone about your efforts to help cure FA!

 

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