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FARA

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FARA

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Have them in circles
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FARA

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FARA

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Ride Ataxia Started as a crazy idea. And it has become the crazy idea that has changed the outlook on research for a rare, life-shortening disease.
Now functioning as a program of the Friedreich's Ataxia Research Alliance, Ride Ataxia features regional weekend rides in different locations all over the USA (NorCal, Dallas, Orlando, Philadelphia).
Join the ride in a location near you and become part of the crazy idea that is changing the world. http://rideataxia.org
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FARA

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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.
http://www.CureFA.org
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FARA
 
Hi Lila,

Thank you for reaching out.

You mentioned that they were tested before they got married. If your niece was tested and doesn't have the FA gene, then your Great Nephew won't have FA.  Both parents need to be carriers for there to be a 25% chance that their offspring will have FA.

Please write back if you have any other questions or concerns.

Together we will cure FA.
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Have them in circles
37 people
Dan Dougherty's profile photo
Kyle Bryant's profile photo
Mary Hallett-Brown's profile photo
Dave Brown's profile photo
Contact Information
Contact info
Phone
(484) 879-6160
Email
Fax
(484) 872-1402
Address
Friedreich's Ataxia Research Alliance 533 W. Uwchlan Ave Downington, PA 19335 USA
Story
Tagline
Focusing the resources necessary to cure Friedreich's ataxia.
Introduction
The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to curing Friedreich’s ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/ biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of information that drive medical advances.

FARA was founded in September 1998 by a group of patient families and three of the world’s leading FA scientists — Drs. Rob Wilson, Bronya Keats, and Massimo Pandolfo. It was staffed and managed as an all volunteer organization until late 2005. FARA's leadership and numerous patient families and friends have raised critical funds over the years to support FA research. Thanks to the brilliant and committed efforts of many FA scientists, we now understand the cause of FA and specific mechanisms leading to damage in FA patients. These understandings allow for more targeted approaches to treatment which are currently being developed for clinical trials.
 
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