The Daniella Maria Arturi Foundation depends on its own funding generated purely from private donations and fundraising events hosted by Marie, Manny and Vic Hadfield, the former New York hockey great that has been an integral player in the fundraising efforts. Through continued generosity, kindness and support DMAF has raised close to $1.9 million dollars. Over $35 million dollars of Federal Government Support and $2.65 million dollars from the Daniella Maria Arturi Foundation commited to furthering research for the cure of DBA. See our TOP 10 DBA Advancements To Know about our DBA effort.
How DMAF Funding Is Used:
All proceeds raised allow DMAF to fund domestic and international scientific research projects that are making a difference in a wide range of areas including DBA gene discovery, animal model experimentation, DBA National Registry and surveillance efforts to track patients, development of cell lines and ribosomal protein function studies.
DBA International Consensus Conference
DMAF coordinates and funds the DBA International Consensus Conference. This conference has grown over the years from a handful of dedicated DBA scientists to now, over 100 experts including the ever increasing number of dedicated DBA researchers and physicians, as well as, leading scientists from many other complimentary fields and government officials representing the National Institutes of Health and Centers for Disease Control and Prevention.
- The International Conference provides the DBA community and interested parties the opportunity to come together to focus on the state of the science for DBA by providing invaluable updates on DBA research from around the world, information on new advancements, leads on potential new treatments, and opportunities to build collaborations.
- DMAF’s interaction with the international scientific and physician community through this conference has also enabled it to become more directly involved in efforts to improve patient care. Coordination of the international experts in this field has resulted in a Clinical Care Consensus Document “Diagnosing and treating Diamond Blackfan anaemia: results of an international clinical consensus conference” published by the British Journal of Hematology offering the latest opinions on how to diagnose and manage the care of patients with DBA.
- DMAF also continues to pursue the concept of an International Patient Data Registry.
DBA Government Advocacy and Public Awareness Campaign
DMAF also coordinates the DBA Government Advocacy and Public Awareness campaign that works to educate Members of Congress and the federal agencies to understand the value of DBA research. Over $35 million of Federal Grant funding has been dedicated to DBA initiatives to furthering research for the cure of DBA.. The DBA Advocacy efforts, which were aided early on by a successful grassroots campaign from many DBA families across the country, have led to tremendous Congressional and Federal support that the entire DBA community can be proud of. To learn more about how the Daniella Foundation is working with the US Government to help advance DBA patient care and research opportunities in Washington DC, click here!