Wednesday, March 30, 2011

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
  • Click the button at the upper left that says "Register to Ride". This will take you to the Ride Ataxia NorCal registration page
  • At the 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 individual 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 
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
  • 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 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 individual fundraising page with an individual total and those individual totals will be combined for the team total on the team page.  All team and individual 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:
  • copy the link for your page, paste it in an email or on facebook, twitter...tell everyone about your efforts to help cure FA!

Friday, March 11, 2011

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:

Thursday, March 10, 2011

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!