ARRE Foundation
@arrefoundation
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Supporting research and education to improve the quality of life for those living with ASXL-related disorders #BohringOpitz #ShashiPena and #BainbridgeRopers
Joined February 2018
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.
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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.
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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.
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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).
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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.
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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 shaking toys. Her biggest challenge is holding her own bottle
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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:
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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:
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Recording available: 🌟 ASXL parent leaders share tips on mental & physical wellbeing while caring for a child with complex needs. Watch now: #CaregiverSupport
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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).
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The January 2025 newsletter is hot of the press! Read it here:
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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.
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Meet Jacob who is one of ~300 people diagnosed with #bainbridge-ropers syndrome, which is caused by a genetic change in his ASXL1 gene. He loves lights, shadows, and Bluey. His biggest challenge is starting school this year BOS
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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.
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Are you getting all the latest news about ASXL-related disorders? Sign up for our email list so you never miss an update:
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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.
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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.
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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).
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