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Union Jack's British Pub Party

UnionJackThe recent fundraiser at Union Jack’s British Pub was a great night! Of course, because of FA I could barely hear anything due to all the people there, but hey! that’s why we had this fundraiser… to cure FA and correct this hearing problem! Randy Sisulak is the organizer of all this and has been holding various fundraising events for FARA for the last several years. He is friends with Karen and Pat Keirnan, and their daughter Erin who has FA.  Aside from the Claxton Classic Golf Tournament, (which I also attended in July, and had a blast!), he has hosted events at various local restaurants to serve as meeting spots to gather FA friends and families, as well as his own circle of supporters who are devoted to funding research for FA. These events serve as a great way for local FA families to meet one another and reconnect. So huge props to Randy for a great fun night! 

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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:


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