Front Page

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


Ultra FARAthon!

Check this out...
A woman 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


Team Photo

Here is a sneak peak of our photo shoot...

Team Photo Shoot

A friend of the team has a make shift photo studio in his office building with studio lights and a high quality camera.  He invited the team to use the studio tonight to shoot some promotional photos.  None of us are professional photographers but hopefully we can get some quality shots.  We'll share the photos here after the shoot!



Hello Team FARA Supporters!

We introduced ourselves to the world three short days ago and we have felt a huge response of support from everyone who hears our story.  We have received several phone calls from eager volunteers!  Thank you!  We are still seeking a few more volunteers and in kind donations.  For more info click here: How YOU Can Help.

As the team steps up its training effort, we are constantly looking for sources of inspiration to help us push harder.  A dose of inspiration can be found in the story of a team of handcyclists who completed RAAM last year.  Here are few pieces of an article about Team Can Be Venture:

"The first summit of Mount Everest, the first sub-4-minute mile — these are athletic feats that redefined our perception of what is possible. And a team of four paraplegic handcyclists has just redefined the possibilities of endurance bicycle racing. At 2 p.m. on June 20, Team Can Be Venture pushed off from the starting line in Oceanside, Calif. — headed for the finish line in Annapolis, Md., 3,021 miles away — in the annual Race Across America, officially known as RAAM, arguably the toughest endurance event in the bicycling world."

"From the start, the racers had a battle on their hands. Keeping pace to meet the cutoff times left no room for error. When not riding, all equipment had to be checked and adjusted, and the riders had to be ready and waiting for their next leg. The transitions — like handing off the baton in a relay race — were crucial. Every minute lost was lost forever, and each minute counted."

Read the entire article from New Mobility magazine here: Handcyclists Conquer Race Across America.


Meet the Team

Team FARA’s 4 members will ride for 30 minutes each before trading positions with a rider in a vehicle.  This strategy will allow the team to have at least one rider on the move 24 hours a day.  The team will travel the 3000 mile route in less than 9 days.

The team is made up of 4 cyclists who are dedicated to the FARA cause and who have participated in cycling events as a team in the past.

Note:  The interviews below were recorded after the team's participation in the RAAM informational seminar which was a 9 hour day of nonstop information about how to get our team across the country safely.

Kyle Bryant
“It’s not just about me anymore, it's about all of us affected by this disease.  We're all in this together.”
Founder and Director of Ride Ataxia, FARA’s cycling fundraiser. Diagnosed with Friedreich’s ataxia at age 17, Kyle’s symptoms made riding a traditional bicycle unsafe as he reached college. After graduation he purchased a 3-wheeled cycle and began a journey that would change his life riding 3,500 miles in 3 years and raising over $800,000 for FA research. He’s been cycling ever since and is no stranger to long distances.
Sean Baumstark
“My commitment to cycling is the core of my physical battle strategy against FA, the disease that jeopardizes the quality of life for myself and many of my friends.”
Sean was diagnosed with FA in May of 2007.  Devastated by the news he immediately started looking for ways to fight back.  Searching online he discovered Kyle Bryant and Ride Ataxia.  Kyle and Sean met a few days later and have been friends ever since.  Sean fights the effects of FA by staying active and fit and rode with the Ride Ataxia team in 2008 from Sacramento to Las Vegas.
John Lockwood
“I am so excited to be competing in RAAM with Team FARA. I believe this will be the ultimate testimonial for those with FA to take the challenge of fighting the disease head on. I also believe that raising awareness through the ‘world’s toughest bike race’ will bring additional attention and curiosity towards FA that will lead to increased awareness and fundraising to contribute to the research efforts needed to find a cure.”
John started Cycling in 2007 but didn’t really get passionate until meeting Kyle Bryant and learning more about Ride Ataxia and his mission to raise awareness about FA through cycling. John has since participated in Ride Ataxia II & III, and various century rides throughout California.

Mike Mellott
“I am excited for the chance to ride for such a great cause and experience an adventure that will change lives because of it!”
Mike got into cycling 5 years ago on his mountain bike with the goal to get outside more.  Mike has been friends with Sean for years and upon hearing about Sean’s diagnosis immediately became a strong supporter of the cause.  Mike has been road biking since 2008 in Ride Ataxia II from Sacramento to Las Vegas. 

Meet the Crew
Mike Bryant is a founding member of the Ride Ataxia Team and has participated in every mile traveled in the events (approximately 3,500 but who's counting) in support of the FA community. His accomplishments include a 2,500 mile ride from San Diego to Memphis a 650 mile ride from Sacramento to Las Vegas and a 200 mile ride from Portland to Seattle. Building on the experience from many miles on the road, Mike will serve the team on the crew.

Diane Bryant is a founding member of the Ride Ataxia Team and has served as crew for every Ride Ataxia event to date. Diane brings the committment of a loving Mother and the experience of many miles on the road.

Team FARA is actively seeking at least 6 more members for the crew. To find out a little more, please visit How YOU can help.

About Friedreich's ataxia

What is Friedreich's Ataxia?

Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich's ataxia. Onset of symptoms can vary from childhood to adulthood. Childhood onset of FA is usually between the ages of 5 and 15 and tends to be associated with a more rapid progression. Late onset FA (LOFA) can occur anytime during adulthood. FARA is supporting research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms.
Signs and Symptoms
  • loss of coordination (ataxia) in the arms and legs
  • fatigue - energy deprivation and muscle loss
  • vision impairment, hearing loss, and slurred speech
  • aggressive scoliosis (curvature of the spine)
  • diabetes mellitus (insulin - dependent, in most cases)
  • a serious heart condition (enlarged heart - hypertrophic cardiomyopathy)
These symptoms are not present in all individuals with FA, for example diabetes occurs in about 10-20% of individuals with FA. The mental capabilities of people with Friedreich's ataxia remain completely intact. The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Most young people diagnosed with FA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s.
FA is a genetic disorder. FA patients have gene mutations that limit the production of a protein called frataxin. Frataxin is known to be an important protein that functions in the mitochondria (the energy producing factories) of the cell. Frataxin helps to move iron and is involved with the formation of iron-sulfur clusters, which are necessary components in the function of the mitochondria and thus energy production. We also know that specific nerve cells (neurons) degenerate in people with FA, and this is directly manifested in the symptoms of the disease.
There are currently no treatments for FA. Patients are monitored for symptom management. FARA is funding research to find a cure. We believe the treatment era for FA is now! As a result of great advancements to understand the cause of the disease, new treatments are now emerging. These treatments address the causes of FA such as gene mutation, frataxin production, iron sulfur clusters, and mitochondrial function. A full listing of treatment initiatives can be viewed in FARA’s treatment pipeline. Several of these treatments will be inclinical trials which require patient participation.

About FARA

FARA Mission / Organization

The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich's ataxia.
FARA's Mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.
FARA's Strategy
FARA focuses on grant making for FA research and building collaborations with organizations dedicated to advancing treatments for FA. Due to the progressive nature of the disease and the promise of treatments in development, there is urgency to our efforts. Directing attention and resources to FA research and partnering with others that share this commitment, FARA believes it can help bring forward effective treatments and a cure for FA.
FARA's Activities
  • Raise funds for advancing scientific research in FA.
  • Facilitate a competitive and highly regarded grant making program that supports greater than 1 million dollars in research annually and focuses on translational and clinical research (moving discoveries through development to clinical improvements for patients).
  • Manage an FA patient registry and support the development of a collaborative clinical network for FA clinical trials.
  • Foster public-private partnerships between academic research investigators and pharmaceutical companies.
  • Promote the collaborative exchange of information within the scientific community through conferences and networks.
  • Work cooperatively with government entities and the other organizations that support scientific research aimed at treatments for this disorder.
  • Rally patients, patient families, scientific investigators, healthcare providers, and others to be supporters and advocates for scientific advancements that will lead to treatments and a cure.
FARA's Approach to Treatment
Thanks to the committed efforts of many FA scientists, we now understand the cause of FA and specific mechanisms leading to damage in patients, such as gene mutation, decreased frataxin production, iron sulfur cluster formation, and mitochondrial dysfunction. FARA is supporting the development of treatments aimed at each of these different mechanisms of damage. Because it is based on solid basic science discovery, this targeted approach to treatment has great potential. Furthermore, FA researchers believe that treatment will come in the form of a “cocktail” therapy - meaning that therapies aimed at the different mechanisms of damage have the potential to be used in conjunction with one another to treat the disorder. The graph in the right hand column depicts the different treatment approaches currently being developed with FARA's support. For further information on these research areas, visit the Research Pipeline page.
Research Ripple Effect
Dr. Harold Varmus, former Director or the National Institutes of Health, gave the following testimony before the House Commerce Subcommitte on Health and Environment in 1998:
“The story of Friedreich's ataxia illustrates how many areas of clinical and basic research can come together in unexpected ways. In this rare disorder, research involving neuroscience, genetics, clinical medicine, molecular biology, and even biology of yeast and bacteria are converging. The findings offer insights to basic biology and to many other disorders, and illustrate the importance of understanding the mechanism of disease in order to devise treatments.”
Insights into Friedreich's ataxia could prove beneficial to understandings in other diseases such as:
  • Muscular Dystrophies (ALS, SMA)
  • Parkinson's Disease
  • Huntington's Disease
  • Alzheimer's Disease
  • Fragile X Syndrome
  • Mitochondrial diseases (MELAS, MERF, Lebers)
  • Ataxia-telangiectasia
  • Cerebellar ataxias
  • Diabetes
  • Stroke