ARRE Foundation

Meet our Board of Directors! Laura Badmaev founded the ARRE Foundation in 2018 and serves as the chair of the Board of Directors. Her son Alex has Bohring-Opitz Syndrome (ASXL1). Laura and her family live in Maine.

Find it in the ASXL Resource Library: Charts of the clinical features and symptoms that have been documented in the medical literature for each ASXL-related disorder. Download here: arrefoundation.org/resource-libra…

Are you getting all the latest news about ASXL-related disorders? Sign up for our email list so you never miss an update: tinyurl.com/3se673zm

Excited to welcome Dr. Cory Rillahan, pediatric oncologist at Dana-Farber/Boston Children’s, to our Medical & Scientific Advisory Board. As a physician-scientist & ASXL3 parent, he brings invaluable expertise to ASXL research! More: bit.ly/4hkuXdz

Recording available: 🌟 ASXL parent leaders share tips on mental & physical wellbeing while caring for a child with complex needs. Watch now: tinyurl.com/468erh48 #CaregiverSupport

Conozca a Angel, una de las aproximadamente 250 personas diagnosticadas con el síndrome #Bohring-Opitz, causado por un cambio genético en su gen ASXL1. Le encanta ver luces de colores e ir al parque. Su mayor desafío es el Estreñimiento.

Meet our Board of Directors! Amanda Scheirer joined the Board of Directors in 2024. She lives in Florida with her son Connor Finn, who has Shashi-Pena Syndrome (ASXL2).

Meet our Board of Directors! Lauren Adams joined the Board of Directors in 2024 and has worked with the ARRE Foundation as a volunteer since 2021 on research-related projects. Her daughter Adair has Bainbridge-Ropers Syndrome (ASXL3). Lauren and her family live in Alabama.

Meet our Board of Directors! Mike Salad joined the Board of Directors in 2021. Mike reviews all of our contracts. His son Josh has Bainbridge-Ropers Syndrome (ASXL3). Mike and his family live in Florida.

@conwayer1 @aisling1751 Can't wait to see some of this esteemed crew at the ASXL Research Symposium in October!

Great to enjoy the last of the Irish summer with a lab BBQ to celebrate paper acceptance 🎉 and individual grant/ travel/ poster prizes over the last few months! ☀️ 🍖 🍻 @aisling1751

Meet our Board of Directors! Sankar Madhavan joined the Board of Directors in 2023. His daughter Diya has Bainbridge-Ropers Syndrome (ASXL3). They live in Luxembourg.

Meet Aurora who is one of ~45 people diagnosed with #shashi-pena syndrome, which is caused by a genetic change in her ASXL2 gene. She loves watching race cars and playing peek-a-poo. Her biggest challenge is  medical stability and communication.

Meet our Board of Directors! Daniel Ordower joined the Board of Directors in 2021. His son Asher has Bohring-Opitz Syndrome (ASXL1). Daniel is the treasurer. He and his family live in New York City.

Meet our Board of Directors! Julie Lopez has served as a volunteer since 2018 and joined the board in 2021. She manages our research grant program and other research initiatives. Julie lives in Idaho with her daughter Isabelle who has Bohring-Opitz Syndrome (ASXL1).

Meet our Board of Directors! Laura Badmaev founded the ARRE Foundation in 2018 and serves as the chair of the Board of Directors. Her son Alex has Bohring-Opitz Syndrome (ASXL1). Laura and her family live in Maine.

Find it in the ASXL Resource Library: Charts of the clinical features and symptoms that have been documented in the medical literature for each ASXL-related disorder. Download here: arrefoundation.org/resource-libra…

Meet Connor Finn who is one of ~45 people diagnosed with #shashi-pena syndrome, which is caused by a genetic change in his ASXL2 gene. He loves books. His biggest challenge is handwriting.

Excited to welcome Dr. Cory Rillahan, pediatric oncologist at Dana-Farber/Boston Children’s, to our Medical & Scientific Advisory Board. As a physician-scientist & ASXL3 parent, he brings invaluable expertise to ASXL research! More: bit.ly/4hkuXdz

Recording available: 🌟 ASXL parent leaders share tips on mental & physical wellbeing while caring for a child with complex needs. Watch now: tinyurl.com/468erh48 #CaregiverSupport

Meet our Board of Directors! Amanda Scheirer joined the Board of Directors in 2024. She lives in Florida with her son Connor Finn, who has Shashi-Pena Syndrome (ASXL2).