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FARAFARA Cure FA

 

News & Press Releases

Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.

 

UAB Researchers Receive Funding to Seek Biomarkers in Friedreich's Ataxia

The University of Alabama at Birmingham researchers have received funding to seek and validate biomarkers for Friedreich's Ataxia with a two-year, $140,000-a-year grant funded by The Friedreich's Ataxia Research Alliance (FARA) and FARA Ireland.

Discovery of validated biomarkers is a high priority because they are invaluable to help speed the development and clinical evaluation of potential drugs. FARA's treatment pipeline already includes nine potential drugs or treatments that are in human clinical trials, seven more that are in preclinical testing, and four others in the early discovery phase.

Marek Napierala, Ph.D., assistant professor in the UAB Department of Biochemistry and Molecular Genetics, UAB Stem Cell Institute, and Jill Butler, Ph.D., instructor in Biochemistry and Molecular Genetics, are co-investigators. ‪

In preliminary work for the grant application, Butler and Napierala looked at RNA gene expression in patient and control fibroblast cells. They identified several gene expression variants as candidate biomarkers, and they now are working to validate those candidates in neuronal and cardiac Friedreich’s ataxia cell line models and to adapt these biomarkers for routine testing in a clinical setting. They measure protein expression levels using reverse phase protein arrays, and they have future plans to look for changes in microRNAs in the Friedreich’s ataxia cells. MicroRNAs are short sequences of RNA that act as robust agents of gene regulation in cells.

“For this research to be successful and make it to the clinic,” Napierala said, “the test or measurement needs to be easily done.” Ideal biomarkers also have to be safe, cost effective and easily adapted from research laboratory testing to the clinic.

Read the entire article HERE

Fourth-grader's family, friends take up fight against her genetic disorder

Wearing their "Hope for To-Morrow" shirts heralding an Oct. 11 fundraising event to raise money to fund research for Friedreich's Ataxia Research Alliance, Sydney McCloskey and Anna Morrow, both of Anneslie, pose for a picture. Anna, 9, has been diagnosed with Friedreich's Ataxia. (Brian Krista / Baltimore Sun Media Group)

Anna Morrow is an athletic fourth-grader at Stoneleigh Elementary School, where she plays field hockey and lacrosse. The 9-year-old also likes to ride her bike; and her parents signed her up for horseback riding lessons at the Graham Equestrian Center after reading a recent story about it in the Towson Times.

Read the entire article HERE

Emotional Homecoming Crowning Brings Awareness

Congratulations to Kyle Waterman, crowned Homecoming King at Linn-Mar High School in Marion, IA. Kyle is also currently enrolled in a clinical trial for Friedreich's ataxia and used his homecoming crown to spread awareness. With so many working together, research continues to move forward! KCRG ABC 9 shared Kyle's story.

Read the full article HERE.

NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act

National Organization for Rare Disorders, Inc. (NORD) Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act. FARA was one of the organizations advocating with NORD for this important legislation.

"The legislation has enabled those with rare diseases to receive compensation up to $2,000 for participating in clinical trials without having this compensation be counted as income when calculating eligibility for Supplemental Security Income (SSI) and Medicaid."

Read the entire article HERE

Sigma Phi Epsilon Raising Awareness and Research Dollars

FARA is excited to be working with the brothers of Sigma Phi Epsilon at Quinnipiac University in Hamden, Connecticut, and veteran fundraisers Sam and Alex Bode, and FARA founding board member Mary Caruso on rideATAXIA+ CT.
 
This 10 mile bike ride fundraiser is in honor of Joey Mullaney, a member of Sigma Phi Epsilon at Quinnipiac, and Sam and Alex Bode.
 
The brothers have been getting a lot of attention lately because of a video they made about helping Joey to the top of a peak near campus:

 

 
 
 
rideATAXIA+ CT will take place on  October 11, 2015.  For details about the event please visit rideataxia.org/plusct.
 
About rideATAXIA+
 
rideATAXIA+ seeks to empower local communities to organize neighborhood bike rides to raise funds for FARA's mission to treat and cure FA through research. In the spirit of rideATAXIA, these grassroots rides include participants of all abilities with route distances of 10 miles or less on a bike trail or low traffic neighborhood roads. Each ride is followed by a gathering to celebrate the camaraderie that drives us toward the ultimate finish line - treatments and a cure.

 

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