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Monthly Update - May 2020


Hello friends,

As you know, May is FA Awareness month. A special thanks to everyone who got involved in the campaigns, events and talks throughout the month. Members of the community flexed (at home) to raise funds through the social campaign #LendUsSomeMuscle, logged miles and fundraising dollars in the rideATAXIA NorCal Virtual Challenge and the Gehr Family hosted a live stream of awesome musical performances in this year's Cure FA Soirée. Pharma partners Exicure, PTC Therapeutics and Avexis all honored FA Awareness month by inviting FARA and FA patient panelists to their virtual team meetings. And FARA hosted our own flash-talk series featuring presentations from Young Investigators on their FA research.

There is always a way to remain active, even from home. One specific research need is for Parents of FA Children age 12 and under and Patients ages 13-17 to complete The Friedreich's Ataxia Health Index Study. This study aims to identify the symptoms that have the greatest impact on quality-of-life for individuals with FA. The results of the study will help guide future research involving FA patients through the development of a patient-reported measure of health. The study involves completing a survey to include questions on demographics and symptoms of FA. ...

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