ARRE Foundation

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 ...
06/04/2026

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-june26

Rujuta Wilson, MD, a behavioral neurologist at UCLA, describes the science between the brain-body connection, how moveme...
06/03/2026

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

It's not too late to register for the 2026 ASXL Research Symposium and Family Conference, taking place June 25–28 in Ann...
06/02/2026

It's not too late to register for the 2026 ASXL Research Symposium and Family Conference, taking place June 25–28 in Ann Arbor, Michigan. June 15 is the final day to register for in-person attendance.

Can’t join us in person? Select sessions from the ASXL Family Conference will be available virtually. Virtual registration opens on June 16. More information coming soon.

Register here: www.asxlconference.org/registration

The Hudson's Handlebar Heroes crew cycles AND runs in Hudson's memory. Congrats on an incredible race, Bryan!
05/31/2026

The Hudson's Handlebar Heroes crew cycles AND runs in Hudson's memory. Congrats on an incredible race, Bryan!

We recently launched our new Discovery Grants program, an initiative focused on funding foundational and translational r...
05/29/2026

We recently launched our new Discovery Grants program, an initiative focused on funding foundational and translational research that helps move ASXL-related disorders closer to future treatments.

As part of the our $435,000 research funding commitment for 2026, $60,000 has been awarded to Dr. Stephanie Bielas at the University of Michigan Medical School to support research into how pathogenic ASXL3 variants alter neuronal cell function in Bainbridge-Ropers Syndrome (ASXL3).

The project focuses on understanding the underlying biology of ASXL3-related disorders, work that is essential for future therapeutic development and improving our understanding of disease mechanisms.

At a time when many areas of rare disease research are facing increasing funding pressures, we believe continued investment in early-stage scientific discovery is critically important.

You can read the full article on our website: 👉 bit.ly/3PQpliX

For our bereaved families, we want to take a moment to remember your ASXL loved one. Please submit your ASXL loved one's...
05/27/2026

For our bereaved families, we want to take a moment to remember your ASXL loved one. Please submit your ASXL loved one's name that you want to be remembered here: https://bit.ly/conference-remembrance

Dr. Rebecca Hicks, a pediatric endocrinologist at UCLA, discusses changes to expect in individuals with neurodevelopment...
05/27/2026

Dr. Rebecca Hicks, a pediatric endocrinologist at UCLA, discusses changes to expect in individuals with neurodevelopmental disorders (such as ASXL-related disorders) as they go through puberty. She discusses typical changes that occur in puberty, signs of precocious puberty (early puberty), and other changes for families to be aware of, such as changes in seizure activity.

Learn more: https://bit.ly/puberty-neurodevelopmental

Across our community, families are participating in research, fundraising, and helping move ASXL-related disorder resear...
05/22/2026

Across our community, families are participating in research, fundraising, and helping move ASXL-related disorder research forward in ways that once felt impossible.

Today, because of that collective effort, we live in a world where treatments for ASXL-related disorders are possible. But there is still a long way to go.

That’s why we created the Discovery Society: a community of monthly donors helping fund the research and resources needed to keep moving forward.

Whether it’s $10 a month or more, every recurring gift helps us continue building toward better treatments, better care, and more answers for our loved ones.

If you’re able, we would be so grateful for your support.

👉 Become a member of the Discovery Society: www.arrefoundation.org/donate/

Even common, typically mild respiratory viruses can cause serious respiratory symptoms and complications in young childr...
05/20/2026

Even common, typically mild respiratory viruses can cause serious respiratory symptoms and complications in young children with ASXL-related disorders. In this recorded webinar, pediatric pulmonologist Joshua Needleman, MD (Maimonides Health) and ASXL parent Laura Badmaev discuss preventative and proactive strategies for managing respiratory viruses in children with ASXL-related disorders.

Learn more: https://bit.ly/respiratory-strategies

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PO Box 102
Gorham, ME
04038

Website

https://bit.ly/m/arrefoundation

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