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ARRE Foundation We support research and education to improve the lives of families living with ASXL syndromes.

Join an informal, virtual conversation for parents and caregivers with a loved one who has been recently diagnosed with ...
10/13/2026

Join an informal, virtual conversation for parents and caregivers with a loved one who has been recently diagnosed with an ASXL-related disorder (ASXL1/Bohring-Opitz Syndrome, ASXL2/Shashi-Pena Syndrome, or ASXL3/Bainbridge-Ropers Syndrome). Welcome calls include a brief introduction to the ARRE Foundation, an overview of resources helpful to newly diagnosed families, and informal discussion with parent volunteers. Welcome calls are held every two months in English unless otherwise noted. For immediate support or for email support in other languages, please contact Sarah Scott at [email protected]. Register here: https://bit.ly/newlydiagnosed-nov26

We're delighted to announce that we've awarded a $60,000, one-year Discovery Grant to Dr. Robert Illingworth at the The ...
10/13/2026

We're delighted to announce that we've awarded a $60,000, one-year Discovery Grant to Dr. Robert Illingworth at the The University of Edinburgh.

His project will investigate how ASXL proteins regulate gene activity during brain development and how disruption of ASXL3 affects molecular and cellular processes associated with Bainbridge-Ropers Syndrome (ASXL3).

Despite advances in our understanding of ASXL-related disorders, significant gaps remain in our knowledge of the underlying disease mechanisms. Through our Discovery Grant program, we are investing in foundational research that addresses these gaps and builds the scientific knowledge needed to inform future therapeutic development.

Read more:đź”—bit.ly/4yGLX6w

Every new participant helps researchers identify meaningful patterns across ASXL-related disorders.Help move ASXL resear...
10/12/2026

Every new participant helps researchers identify meaningful patterns across ASXL-related disorders.

Help move ASXL research forward. Every family who participates helps researchers better understand ASXL-related disorders and prepare for future treatments.

Learn more about the ASXL-Related Disorders Natural History Study and Biobank: arrefoundation.org.

These are significant findings from the ASXL-Related Disorders Natural History Study. Such findings highlight an importa...
10/11/2026

These are significant findings from the ASXL-Related Disorders Natural History Study. Such findings highlight an important area for future research and clinical care. Read the full study: bit.ly/4AZc6iO

These are significant findings from the ASXL-Related Disorders Natural History Study. Such findings help improve clinica...
10/10/2026

These are significant findings from the ASXL-Related Disorders Natural History Study. Such findings help improve clinical understanding of feeding difficulties. Read the update: bit.ly/4AZc6iO

These are signficant findings from the ASXL-Related Disorders Natural History Study. Understanding sleep challenges help...
10/09/2026

These are signficant findings from the ASXL-Related Disorders Natural History Study. Understanding sleep challenges helps identify where future research and support are needed. Read the update: bit.ly/4AZc6iO

These are significant findings from the ASXL-Related Disorders Natural History Study. Such findings help researchers dev...
10/08/2026

These are significant findings from the ASXL-Related Disorders Natural History Study. Such findings help researchers develop better communication outcome measures that matter most to families for future studies. Read the update: bit.ly/4AZc6iO

Rujuta Wilson, MD, a behavioral neurologist at UCLA, describes the science between the brain-body connection, how moveme...
10/07/2026

Rujuta Wilson, MD, a behavioral neurologist at UCLA, describes the science between the brain-body connection, how movement and mobility impacts other body systems, and how families can help maximize their child’s independence across a spectrum of skills and abilities. This presentation about neurology in neurodevelopmental disorders was given at the 2022 ASXL Family Conference.

Learn more: https://bit.ly/brain-bodyinmotion

This is a significant finding from the ASXL-Related Disorders Natural History Study. These results help researchers focu...
10/07/2026

This is a significant finding from the ASXL-Related Disorders Natural History Study. These results help researchers focus future studies on the outcomes that matter most to families. Read the update: bit.ly/4AZc6iO

Data source: 18 participants in the ASXL-Related Disorders Natural History Study, including 2 ASXL1 participants, 2 ASXL2 participants, and 14 ASXL3 participants.

For families, life with Shashi-Pena Syndrome means navigating a condition so rare that most doctors have never heard of ...
10/06/2026

For families, life with Shashi-Pena Syndrome means navigating a condition so rare that most doctors have never heard of it. Parents juggle therapies, feeding challenges, developmental delays, and endless appointments—often without clear answers or guidance. Every milestone can feel uncertain, and every step forward requires resilience.

That’s why research is vital: it’s the only way to build knowledge, improve care, and create hope for families living with Shashi-Pena Syndrome.

Today is Shashi-Pena Syndrome Awareness Day, and we're asking you to help us by making a donation to research today: bit.ly/sps-give

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PO Box 102
Gorham, ME
04038

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