Register now for “Ask-a-Researcher” with Dr. Rosanna Weksberg
Join Dr. Rosanna Weksberg and her team to learn about their study of the patterns of DNA methylation, or signatures, associated with changes in the ASXL genes.
National Volunteer Week spotlight: Julie Lopez
Julie Lopez, mom of five kids, including her youngest who has Bohring-Opitz Syndrome, serves as the volunteer lead of the ASXL Professional Network & Research Committee.
ARRE Foundation shares family survey results
The ARRE Foundation conducted a survey of families from February 25 to March 8, 2021. Over 80 families from 7 countries responded to the survey. Feedback from the survey will help inform the ARRE Foundation’s 2021-2023 strategic plan.
ARRE Foundation appoints Amanda Johnson as Chief Development Officer
Johnson will serve as the organization’s first staff member and will oversee fundraising, marketing and communications, and outreach events to support the ARRE Foundation’s mission of advancing research and improving quality of life for ASXL-impacted children.
Research grant spotlight: Dr. Val Arboleda (UCLA)
The ARRE Foundation funded Dr. Arboleda’s research proposal which aims to “develop the knowledge base and molecular assays to eventually be able to rapidly screen for potential drugs that might help individuals with Bohring-Opitz Syndrome.”
Hang on: Glass half full in a COVID world
While isolation and uncertainty are new for many people in this new COVID world, they are familiar experiences to many rare disease families like ours.
Throw out the expectations playbook and visit Wonderland
Instead of focusing on all the things that these children cannot do, reposition your mindset to what they enjoy and create inclusive experiences with them.
2018 Inaugural ASXL Research Symposium - a GREAT success!
At the first-ever ASXL Research Symposium, physicians, researchers, providers, and families from around the world gathered at the UCLA Luskin Conference Center to discuss scientific and clinical research of ASXL syndromes and brainstorm ideas for the ARRE Foundation research strategy.