Front Page

Check out this article from the Grass Valley Union that made the front page this week: Crusade for a Cure

Ultra FARAthon!

Hey folks,

I came across this story the other day about a woman who is going to run a 7 day Ultra  Marathon in the desert to benefit FA.
Her name is Marilena Wilkinson and here are a couple pieces of her website:
"By participating in the Atacama Desert Ultra Marathon, I will be attempting to cover 250km across some of the most inhospitable terrain in 7 days. A-marathon-a-day is an obvious comparison; but it is much more than that. It has been described as one of the toughest, most gruelling ultra-distance events in the world.
Extremes in temperature, climbs to heights in excess of 10,000ft, and long stretches of energy sapping salt-flats might just give you an idea of what I am committing myself to do. 

The main thing, though, is that I am doing it for a wonderful and most worthy cause, which I do hope you will support. Friedreich's Ataxia (FA) is a cruel disease of which there is no known cure. It is a debilitating, life-shortening, degenerative, neuro-muscular disorder. 

I have watched its cruel and relentless progress affect the health of the daughter of my very good friends in Hong Kong, Angelo and Monica Pepe.  Angelo worked tirelessly raising funds for research into the disease, and spent lots of his own money too. Sadly, Angelo succumbed to cancer at the end of 2008, and, before he died, I promised myself that I would try and help towards his work, and raise money for research in the hope that a cure can be found. 

The charities for which I will be raising money are Ataxia UK and  Friedreich's Ataxia Research Alliance (FARA).  FARA is a non-profit, tax-exempt organisation dedicated to curing FA through research, pharmaceutical/biotech drug development, clinical trials and scientific conferences."

View marilena's website HERE. 

Two New Rides!

FARA Presents 

Ride Ataxia Tampa Bay 

and 

Ride Ataxia NorCal!

Hello Cycling Enthusiasts!

FARA has two new reasons to look forward to the spring cycling season!  

The FARA staff has been hard at work for the past several months in order to bring you two challenging and family fun cycling events in the spring!  So it is time to tune up that bike that's been in the garage all winter and start riding because registration is now open for Ride Ataxia NorCal and Ride Ataxia Tampa Bay!

Ride Ataxia Tapma Bay

In partnership with the Outback Steakhouse Golf Tournament, Ride Ataxia Tampa bay will take place on Tuesday April 13 along the Suncoast Trail in sunny Tampa Bay, Florida.  The ride will feature something for everyone with 10, 25, and 50 mile routes.  The Suncoast Trail provides a safe, inviting, scenic atmosphere for a family ride. All three routes have a relatively flat elevation profile which will allow participation from all ability levels.

FARA will be one of the benefiting charities at this year's Outback Steakhouse Pro-Am Golf Tournament andRide Ataxia is one of a handful of events leading up to the tournament.  Registration for the ride includes entrance into the Golf tournament on the weekend following the ride.  

To find out more details, register for the ride, and make a donation please visit our event site at http://rideataxia.org/tampabay.

Ride Ataxia Nor Cal

On May 15 and 16, 2010, participants will ride 100 miles in 2 days along the scenic Foothills of Northern California from Folsom, CA to Grass Valley, CA and back.  The ride will also include 10- and 25-mile routes allowing participants of all abilities.  FARA expects over 400 participants ranging from beginners to expert cyclists, families, FA patients, and dedicated supporters. 
Locally the event falls on the same weekend as the start of the Amgen Tour of California; one of the country’s most popular professional bicycle races which will bring Lance Armstrong and Levi Leipheimer as well as many other pros to the area.  Ride Ataxia will provide the opportunity to ride some of the same roads as the Amgen Tour of California the day before the pros race through.
To date, Ride Ataxia has helped bring together $830,000 for FA research and will pass the million dollar mark with the efforts from each participant during the Nor Cal ride. The goal for this event is to raise a total of $170,000.

To find out more details, register for the ride, and make a donation please visit the event website at http://rideataxia.org/norcal.

FARA has Ride Ataxia events planned for Philadelphia and Southern California in the Fall of 2010!

Neurology Now!

Friedreich's Ataxia was featured in a major medical journal this month, Neurology Now!  When they mention Repligen Corporation they are talking about work that was funded by a Ride Ataxia Grant!  We are truly making an impact!

A piece of the article-
"There is promising news on the horizon for people with Friedreich’s ataxia, a neurological disease that causes progressive muscle weakness, difficulty walking, slurred speech, and heart problems. The discovery of the mechanism for a potential drug treatment was reported in the September 25, 2009 issue of the medical journal Chemistry & Biology.

A team of researchers led by Joel Gottesfeld, Ph.D., professor of molecular biology at the Scripps Research Institute in LaJolla, CA, discovered the specific enzyme target of a compound called 4b that stops the progression of the disease in mice. Dr. Gottesfeld’s team discovered the compound three years ago but didn’t
know how it worked. Now, having identified the particular enzyme that 4b blocks, they are developing targets for treatment."
Read the entire article here: http://curefa.org/_pdf/NeurologyNowJan2010.pdf

The Picture-
Note: This picture was taken by Rick Guidotti representing his organization Positive Exposure.  Through an unfortunate mix up the credit was given to my friend Blake Andrews at SLOTography.  Sorry Rick, this one worked out in Blake's favor!

The Art of Cycling In The Rain

My friend Blair at The Sacramento Bee just published an article about winter cycling. Blair and I often pass each other on the bike trail so he called me up to get some comments about riding in Sacramento in the winter. Below are a couple tidbits from my input into the story. To read the full article click here.  
"We have an absolutely beautiful trail out there," says Kyle Bryant, who has the inherited disease Friedreich's ataxia, which weakens muscles, vision and hearing, and is life-threatening. He rides a three-wheel recumbent bike to help him with balance and is a regular presence on the American River bike trail.
"I just like getting outside. It's painful to be cooped up. You feel like your muscles are going stale all day," he says. "It's tough for the first 15 minutes getting warmed up, but at the end, you feel like you're ready to conquer the world."
...
Bryant says waiting too late to achieve springtime fitness can lead to injuries.
"You need to start riding now. I developed knee problems in the past that resulted from riding too hard in a short amount of time," he says. "I had those problems when I was a total beginner cyclist."