ARRE Foundation

Supporting research and education to improve the quality of life for those living with ASXL-related disorders #BohringOpitz #ShashiPena and #BainbridgeRopers

[ARRE Foundation @arrefoundation]

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.

[ARRE Foundation @arrefoundation]

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: https://t.co/2Vw5pEMzCg

[ARRE Foundation @arrefoundation]

Are you getting all the latest news about ASXL-related disorders? Sign up for our email list so you never miss an update: https://t.co/RTf0BTKrBm

[ARRE Foundation @arrefoundation]

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: https://t.co/CA9D8rmLhp

[ARRE Foundation @arrefoundation]

Recording available: 🌟 ASXL parent leaders share tips on mental & physical wellbeing while caring for a child with complex needs. Watch now: https://t.co/nObsj8M4Jk #CaregiverSupport

[ARRE Foundation @arrefoundation]

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.

[ARRE Foundation @arrefoundation]

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).

[ARRE Foundation @arrefoundation]

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.

[ARRE Foundation @arrefoundation]

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.

[ARRE Foundation @arrefoundation]

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

[ARRE Foundation @arrefoundation]

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.

[ARRE Foundation @arrefoundation]

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.

[ARRE Foundation @arrefoundation]

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.

[ARRE Foundation @arrefoundation]

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).

[ARRE Foundation @arrefoundation]

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.

[ARRE Foundation @arrefoundation]

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: https://t.co/2Vw5pEMzCg

[ARRE Foundation @arrefoundation]

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.

[ARRE Foundation @arrefoundation]

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: https://t.co/CA9D8rmLhp

[ARRE Foundation @arrefoundation]

Recording available: 🌟 ASXL parent leaders share tips on mental & physical wellbeing while caring for a child with complex needs. Watch now: https://t.co/nObsj8M4Jk #CaregiverSupport

[ARRE Foundation @arrefoundation]

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).