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2024 Annual Report

Our 2024 annual report shares our progress to improve the lives of families living with ASXL-related disorders through research—a journey driven by love and an unyielding commitment. Your investment in our mission is changing lives, and we couldn’t do it without you. Thank you for your support!

Thank you from our founder

Dear friends:

This year has been about building capacity – strengthening our ability to support families today while creating the infrastructure needed to drive scientific breakthroughs tomorrow. With your generosity, we’ve expanded our team, launched vital family resources, and invested in the research expertise required to tackle the complexities of ASXL-related disorders. These investments are already paying dividends in new knowledge, stronger programs, and a community better equipped to face the future together. Thank you for fueling this momentum and helping us lay the groundwork for lasting impact.

Laura Badmaev
Founder and Chair, ARRE Foundation
Mom to Alex, Bohring-Opitz Syndrome (ASXL1)

Your support is powering progress

Your contributions to the ARRE Foundation fuel our two-part strategy: supporting urgent family needs now while simultaneously laying the groundwork for scientific breakthroughs.

Here’s how your support powered our progress in 2024:

Developed new “Living with” guides

We published the first-ever “Living with” guides for Bohring-Opitz, Shashi-Pena, and Bainbridge-Ropers Syndromes – giving families plain-language, practical tools for daily life.

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Launched new virtual programs

We hosted 12 virtual programs in 2024 that connected families, caregivers, and experts, ensuring no one in our community feels alone.

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Expanded our team

We hired a Family Education and Engagement Coordinator and a Chief Scientific Officer to strengthen our ability to serve families and build our long-term research strategy on the path to treatments and better care.

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Funded ASXL research

We funded $184,000 in groundbreaking research in 2024, including the first comprehensive study of neurodevelopmental and behavioral aspects of ASXL-related disorders.

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Facilitated 120 research visits

We facilitated 120 research visits at the 2024 ASXL Family Conference in Baltimore, fueling new publications and discoveries that will advance our understanding of ASXL-related disorders and how to take better care of people who have these conditions.

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Supported a critical clinical publication for Shashi-Pena Syndrome

We supported the development of the first published GeneReviews article for Shashi-Pena Syndrome — a much-needed clinical reference guide and resource for clinicians and families alike.

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So far in 2025, we have...

Launched the ASXL Census

The ASXL Census is a global effort to count everyone with an ASXL-related disorder, including Bohring-Opitz (ASXL1), Shashi-Pena (ASXL2), and Bainbridge-Ropers (ASXL3).

Join the ASXL Census and help us show the world we’re here, we’re united, and we’re ready for progress.

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Unveiled our upgraded website

We unveiled a new ARRE Foundation website designed to better serve the needs of our community. The site includes an expanded ASXL Resource Library for families and a new “For Professionals” section to equip clinicians, researchers, and educators with trusted information.

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Invested in the ASXL-Related Disorders Natural History Study and Biobank

We have committed $180,000 over three years to support the ASXL-Related Disorders Natural History Study and Biobank—an essential effort to track disease progression and collect data and samples.

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Hosted the 2025 ASXL Research Symposium

We welcomed over 50 attendees from five countries at the 2025 ASXL Research Symposium in Boston in October – bringing together leading scientists and clinicians to share data, spark collaborations, and accelerate progress for individuals with ASXL-related disorders.

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What your support means to ASXL families

The ARRE Foundation has been so helpful in this rare disease journey. They have provided me with support and a community. They also spearhead research that gives families like ours hope for the future.

ASXL parent

2024 Leadership

Board of Directors

Laura Badmaev, Chair
Daniel Ordower, Treasurer
Lauren Adams
Julie Lopez
Sankar Madhavan
Mike Salad
Amanda Scheirer

Stephanie Bielas, PhD
Natasha Ludwig, PhD
Bianca Russell, MD
Wen-Hann Tan, BMBS

These leaders served our organization in 2024. See our current leadership team.

Joanna Bailey
Alysha Saleh Baratta
Sheri Bermejo
Teresa Locklear
Jo McKee
Jamie Ordower
Kelsey Scardera
Bob Walsh
Erin Wissink

These leaders served our organization in 2024. See our current leadership team.

2024 Financial Report

Revenue

Individuals: $137,382
Corporations: $16,331
Foundations: $587,000
Contracts: $59,990
Events: $63,004
Investment gains: $24,147

Total revenue: $887,854

Expenses

Research grants and awards: $218,978
Scientific strategy and advising: $41,031
Conference expenses: $109,967
Family education: $30,314
Fundraising expense: $28,720
General administrative: $45,910

Total expense: $474,919

Get in touch

Our progress is driven by our community! We can’t do it without you. Have a fundraising idea? Connections you think might be helpful to our mission? A suggestion for a family resource? Please reach out to us! We’re eager to hear from you.

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2024 Annual Report

Thank you from our founder

Your support is powering progress