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FARAFARA Cure FA

FARA Newsletter

From the Executive Director

Advancing the Treatment Pipeline Increased stakeholder engagement has been a key factor in advancing our progress towards treatments. In 2014, there have been more individuals with FA, scientists and physicians, industry partners, government partners, and supporters engaged and involved than ever before, and this has been critical to optimizing our progress.

 

All stakeholders are critical to move drugs and therapeutic approaches in the pipeline through the discovery, preclinical and clinical testing process towards approved treatments. To that end, additions to our pipeline, reported results and ongoing trials are highlighted here...KEEP READING

 

President's Message

Dear Friends, In these president's letters, I have often sung the praises of FA families, the FA community and the FARA family for working so well together and doing the hard work needed to put all the pieces in place to enable progress toward treatments and a cure. You have come to know very well how important it is for all of us to be assembling the resources, infrastructure, relationships and partnerships necessary to accomplish our mission. Over the last couple of months, though, I have been truly amazed and greatly encouraged by the fact that we are now hearing this FARA message being broadcast in a wonderful chorus from all our public and private partners...KEEP READING

 

 

FARA Energy Ball Counts Down for the Cure

5...4...3...2...1...Count Down for the Cure! It is easy to be wowed by the numbers of this year's Energy Ball - a sold-out crowd of over 800 attendees, a record-breaking Fund a Cure initiative that raised over $300,000, and an overall event total of $2 million (gross) including in-kind gifts and financial contributions. Even the theme of the event, Countdown for the Cure, showcased numbers on whimsical clocks adorning beautiful centerpieces on every table. Yet the special energy behind those numbers was all about the people - the friends that made up the planning committee, the partners who purchased sponsorship and donated auction items, and the supporters who attended and participated with heartfelt generosity...KEEP READING

 

 

Research Grant Program

Awards, Deadlines and Research Updates During 2014, FARA received 31 letters of intent (LOIs) for our named and general research awards, reviewed 18 new grant applications and funded 10; we anticipate that at least three more will be approved for funding before the end of the year. As well as the 10 new grants, continuation funds were provided for nine projects. So far FARA has provided a total amount of more than $3.9m in research funding during 2014. This amount includes ongoing support for the Collaborative Clinical Research Network (CCRN) and the Penn Medicine/CHOP Center of Excellence, as well as a grant (cofunded with our FRDA advocacy group partner, GoFAR) to the Jackson Laboratory for the development and characterization of additional mouse models that are needed by the FRDA research community for pre-clinical studies...KEEP READING

 

 

 

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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