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This spring newsletter will introduce two exciting developments: The RUNX1 FPD/AML Mutation Database and our partnership with the National Institutes of Health (NIH) on a groundbreaking clinical and natural history study they will be undertaking. Upcoming RRP-ALSF grant cycle dates are announced as well as our upcoming November 2018 Scientific Meeting in Santa Barbara, CA.
We will synopsize the conference at the University of Pennsylvania last November and announce our latest grant recipients from both our joint program with Alex’s Lemonade Stand Foundation for Childhood Cancer (ALSF) and an independent award for our Scientific Director.
This autumn newsletter will include a question-and-answer between Dr. Speck and one of our esteemed grant recipients, Dr. Leonard I. Zon, and highlight some updates to our website, introducing the secure online platform we have selected to facilitate patient connection and dialogue: RareConnect. We have our eyes set on hosting our first patient conference for the end of next year, and are beginning a big ‘push’ to ensure that all individuals with the germline RUNX1 mutation know about us. Please help get the word out. If you are a clinician or a genetic testing company, we have a one-page document about us and our efforts that you can share with interested parties: http://www.runx1.com/about/one-page
In this newsletter, you will find an update on our joint grant offering with the Leukemia and Lymphoma Society (LLS). Grants have been awarded to three different recipients, and below we outline a summary of each project. We also wanted to formally announce our Scientific Advisory Board, giving them the due thanks for their time and effort devoted to The RUNX1 Research Program’s aims. Finally, please remember to mark your calendar for our first RUNX1 Symposium on November 13, as part of the larger RUNX Symposium taking place November 12-15, in Philadelphia.
Welcome to our very first RUNX1 Research Program newsletter! Given that this newsletter marks our first written update, we thought it made sense to share some of our family history and hence the story of how this Program began. As well as an opportunity to thank the people and institutions instrumental to the set-up of our RUNX1 Program, we wanted to update you on the $1.25 million dollars of grants we’ve just awarded, giving a little synopsis of the projects. Lastly, we wanted to announce that our first symposium will take place in November 2017 in conjunction with Dr. Nancy Speck and Dr. Paul Liu’s International RUNX Conference.