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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.


Team FARA Races Across America to Raise Awareness for Friedreich's ataxia


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Introducing the New FARA Logo

Introducing the new FARA logo Dear FARA community, the FARA Staff and Board is pleased to announce the introduction of an updated FARA logo. This mark replaces the previous logo for all FARA printed and web materials. It is our hope that you find this new mark to be distinctive, inclusive and identifiable.

Why a new logo?

Over the past year, FARA received feedback that our logo needed to be updated. We were fortunate to have access to the advice of advertisi ng, marketing, graphic design and fundraising professionals. After getting to know FARA , they all recommended an update to the logo, in order to more accurately convey the culture and mission of our organization. This became even more necessary as FARA is working with a growing number of academic, pharmaceutical, government and advocacy organizations, and expanding our corporate partnerships. Also, many of our fundraising efforts have their own logo or symbol and we wanted a mark that supported this but also clearly identified our organization.

Read More: Introducing the New FARA Logo

Keith Michael Andrus: 12/21/1985 - 01/22/2010

We, at the Friedreich's Ataxia Research Alliance (FA RA), are deeply saddened to inform you of the passing of Keith Andrus on January 22, 2 010. Keith was the beloved son of FARA President Ron Bartek and his wife Raychel. Keith's diagnosis of Friedreich's ataxia inspired Raychel and Ron to pick up that torch, joining him in his fight, and found FARA. Even during the final and very challenging months o f Keith's life he courageously continued to not only advocate for himself but for others with FA as he left no stone unturned exploring advanced and experimental treatment options. Keith also made the decision to make the ultimate contribution to research at the end of his life with the donation of his tissues so that research will continue. Because of Keith many thousands have hope for a treatment for FA. Thank you, Keith

Read More: Keith Michael Andrus: 12/21/1985 - 01/22/2010

Penwest Announces Initiation of Phase IIa Clinical Trial of A0001 in Patients with Friedreich's Ataxia

Patterson, NY – Penwest Pharmaceuticals Co. (Nasdaq: PPCO) today announced that it initiated a Phase IIa clinical trial for A0001 in December and that the screening of patients is underway. The study is being conducted at The Children’s Hospital of Philadelphia in patients with Friedreich’s Ataxia (FA).

The primary objective of this study is to investigate whether treatment with A0001 has a discernible impact on various functional, biochemical and subject/clinician-rated scales relevant in the treatment of FA. The Phase IIa clinical trial is a double-blind, randomized, placebo controlled trial that includes a high and low dose of A0001 and a placebo. Penwest plans to enroll approximately 42 patients with a 2:1 randomization of drug to placebo. The patients will be dosed for 28 days. The Company expects data from this trial in the third quarter of this year.

Read More: Penwest Announces Initiation of Phase IIa Clinical Trial of A0001 in Patients with Friedreich's Ataxia

FARA offered access to National Scholarship Program for Students with Disabilities

Available to students in every state in the continental U.S., the ChairScholars National Scholarship Program provides eligible high school seniors and college freshmen up to $20,000 for tuition to attend the college or university of their choice.  

National ChairScholar recipients have been accepted at some of the nation’s most respected colleges and universities including Penn
State University, University of Michigan, University of Minnesota, Purdue University, University of Wisconsin, Yale University, New York University, University of Florida and Tulane among others. Our scholarship recipients are bright and ambitious students, who have overcome the challenge of their disability by focusing on the goal to excel academically, and become instrumental members of their communities. They are the next generation of leaders.

To date, the ChairScholars Foundation has awarded 194 National Scholarships. Of those students, 82 are currently attending colleges and universities throughout the United States.

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