The Diamond Blackfan Anemia Foundation (DBAF) is the foremost organization supporting and fighting for those with DBA. It has dual primary roles:
- To support the families afflicted by this extraordinarily rare and mysterious disorder; and
- To raise money to further DBA research.
The DBA Foundation does a very good job of meeting both of those missions. They post websites and updates of children with DBA and provide support to parents. They organize a yearly outdoor camp to raise money, celebrate the children, and further awareness. They collect money from donors and from families who have raised money on behalf of the foundation and fund medical research for DBA. Every year, they receive a number of grant proposals (they mentioned two just in their last newsletter) from scientists and researchers seeking to finance groundbreaking research for a cure. To further DBA awareness, the foundation offers DBA support bracelets, stickers, and educational material. Last year, because of the money raised by the DBA foundation, new research projects costing hundreds of thousands of dollars were funded and are now underway.
If you would like to support the DBA Foundation and the research of a cure for DBA, please consider making a donation. At some point, we may organize a fundraising event for the DBAF in Adahlia’s name. If so, we will post news of it to this website. If I can get some of their stickers and bracelets, I will make them available here, too.