Member Spotlight

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The Alliance’s “member spotlight” is currently shining on …

FARA ADVOCATES FOR PATIENTS …

FARA (the Friedreich’s Ataxia Research Alliance) advocates for the thousands of children and adults across the United States who were born with Friedreich’s ataxia and are fighting this disease bravely but dying young because they currently have no treatment. FARA is an IRS-recognized public charity that funds medical research aimed at treatments and a cure for Friedreich’s ataxia — a rare, hereditary, debilitating and life-shortening neuromuscular disorder.  Childhood onset of symptoms usually occurs between the ages of 5 and 15 and includes loss of strength and coordination in the arms and legs requiring early, full-time wheel chair use in most cases; impairment of vision, hearing and speech; aggressive scoliosis (curvature of the spine); energy deprivation; diabetes, and severe heart disease that frequently is the cause of early death.

FOR WHOM A STRONGER FDA IS A MATTER OF LIFE AND DEATH

FARA has become an active, committed member of the Alliance for a Stronger FDA because a stronger FDA can save our children’s lives.  The FDA has long been dangerously under-resourced and under-staffed.  Because of chronic shortfalls in review personnel and the sophisticated technology needed to perform scientific analysis, the FDA has made well-known errors that have, understandably, made the FDA extremely risk averse.  As a result, FDA reviews of proposals for clinical trials and new drug approvals are taking far too long and the FDA is unable to accept the degree of risk that our patients and patient families are eager to accept in order to develop the treatments they need.  Our patients have no treatments and they are dying while waiting for approval of the clinical trials needed to develop such treatments.  FARA and our patients encourage Congress to provide the FDA with the resources the agency needs to save our children’s lives. Simply put, a stronger FDA will save lives.  A weaker FDA places those lives at great risk.

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To nominate your own organization or another Alliance member to be featured in this “Member Spotlight,” please e-mail Tony Curry and provide him with a brief “Perspective” and quotations for “Why [organization] Supports the Alliance” using the format shown above. If you also wish to feature an image of some type, please either provide the image as a .gif, .png, or .jpg file or provide a link to a specific page on your web site from which we can download the image.