2023: An unprecedented year of progress in the ASXL community

From new family resources to significant investments in research, the ARRE Foundation is catalyzing progress toward better care and treatments for our loved ones with ASXL-related disorders. As 2023 comes to a close, we’re proud to share what we’ve accomplished this year as a community:

🩺 Created the ASXL Care Directory
📈 Published a new clinical resource for families and doctors
❤️ Created a program to support newly diagnosed families
🌐 Surpassed 70 researchers in the ASXL Research Network
🔬 Hosted the 2023 ASXL Research Symposium
🏆 Added 2 leaders to our Medical and Scientific Advisory Board
🧪 Committed $60,000 to developed tools for reliable and accurate ASXL experiments
💊 Supported a $5,000 pilot grant to support promising treatment pathways
🔮 Invested $50,000 in long-term data collection through the ASXL Registry and Biobank
⭐️ Received $99,982 in PCORI funding to engage families in research
🙋‍♀️ Supported family enrollment in 12 research studies
📄 Celebrated 4 new research publications about ASXL-related disorders