research

May 28, 2019May 24, 2019

As a Patient, My Contributions to Research Are Important

Columns, No Good Excuse - a Column by Sean Baumstark

I recently visited my neurologist and FA clinical team at UCLA. I am participating in a clinical trial, and UCLA is my nearest study site. Oftentimes, clinical trials are ... Read more

March 7, 2019March 20, 2019

What Fundraising Means to Me

Columns, My Darling Disability - a Column by Kendall Harvey

I’ve always been fascinated by stories featuring people who confront adversity by fighting against all odds to do extraordinary things. I’ve cried during “Extreme Makeover: Home Edition” or when ... Read more

February 8, 2019February 14, 2019

The Power Behind the FARA Patient Registry

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

Last month, I attended a PTC Therapeutics meeting with two other Friedreich’s ataxia patients named Kyle Bryant and Connor Sweeny, plus people who work for the Friedreich’s Ataxia Research ... Read more

October 5, 2018October 4, 2018

6 Tips to Prepare for rideATAXIA, the Big Bike Ride

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

Sweaty palms, excitement, hope, and motivation — I’m preparing to be in position at the starting line at the rideATAXIA Philly event. The annual bike ride takes place in Southern ... Read more

March 15, 2018

‘A Disease May Be Rare, Hope Should Never Be,’ Says Boy with SMARD at Connecticut Rare Disease Day Event

News

When it comes to rare diseases, one that definitely makes the list is spinal muscular atrophy with respiratory distress — SMARD, for short. Hunter Pageau, a 12-year-old boy from ... Read more

October 9, 2017October 9, 2017

Why I Choose to Participate in Clinical Trials

Columns, Fighting FA - a Column by Frankie Perazzola

You can ask my entire family — they’ll tell you I was fully willing to participate in clinical trials from day one. I’m assuming it was a combination of the ... Read more

October 5, 2017October 5, 2017

FA Global Patient Registry Key to Moving Research into Treatments, FARA Says in Interview

News

Among all efforts made to advance research and treatment development in Friedreich’s ataxia (FA), one stands out: the Friedreich’s Ataxia Global Patient Registry run by the Friedreich’s Ataxia Research ... Read more

September 29, 2017October 2, 2017

#IARC2017 – Try to Treat Our Hearing, Vision and Everyday Problems, Patients Ask Ataxia Researchers

News

Many scientists working on ataxia therapies focus on the movement, balance and heart problems that are the hallmarks of these neurological diseases. But a panel of five patients and ... Read more

September 27, 2017October 1, 2017

#IARC2017 – FARA Rose from a Family’s Pain in Hopes of Helping Others

News

Ron Bartek has a long list of accomplishments. He was a West Point graduate and U.S. Army officer, worked on U.S.-Soviet nuclear arms reduction treaties for the State Department ... Read more

June 16, 2015June 16, 2015

Patient Telomeres on DNA Involved in FRDA Pathogenesis

Friedreich's Ataxia, News

Often times, researchers focus on cells from the brain or the heart when studying Friedreich’s ataxia. A new study from Brunel University London and University of Cambridge in the ... Read more

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