Turn awareness into action on February 5th
On February 5th, families around the globe unite for Bainbridge-Ropers Syndrome Awareness Day. With an estimated 500 people diagnosed worldwide, this ultra-rare condition is often overlooked — leading to delayed diagnoses, limited treatment options, and little research funding.
Your voice can change that. Stand with us to honor our loved ones living with Bainbridge-Ropers Syndrome, raise awareness, and drive critical ASXL-related research forward.
In honor of Bainbridge-Ropers Syndrome Awareness Day on 2/5, make a meaningful impact by making your $25 donation (one-time or monthly) or by hosting an online fundraiser in honor of someone you love with Bainbridge-Ropers Syndrome. Every dollar fuels research, education, and family support.
Our campaign goal is $2,500, and together we can get there!
You can take action today:
- Make a one-time $25 donation
- Start a $25 monthly donation
- Host an online fundraiser with a personal fundraising page (see resources below for help setting up your page)
If you have a bigger fundraising idea, we’re here to help you put your idea into action! We can help support you with planning, promotional materials, and the technology to collect donations. Contact us
Support resources for personal fundraising pages:
2026 Bainbridge-Ropers Syndrome Awareness Day shirts and apparel are on sale now in our Bonfire shop! The 2026 shirts were designed by Bainbridge-Ropers Syndrome mom, Ericha. Check out more of Ericha’s designs at her Etsy shop, Rare Moms Club.
Your participation brings us closer to answers. Contribute to a research study to help shape better care for those with Bainbridge-Ropers Syndrome:
Learn more about Bainbridge-Ropers Syndrome
- About Bainbridge-Ropers Syndrome
- Living with Bainbridge-Ropers Syndrome guide
- ASXL Census: How many people have Bainbridge-Ropers Syndrome?
Sharable facts about Bainbridge-Ropers Syndrome
- Bainbridge-Ropers Syndrome is a neurodevelopmental disorder.
- Bainbridge-Ropers Syndrome is caused by a change, commonly called a mutation, on the ASXL3 gene. This change is typically random (not inherited) and happens shortly after conception. In some rare cases, it may be inherited from a parent.
- There are an estimated 500 people diagnosed with Bainbridge-Ropers Syndrome globally (but we think many more people are living undiagnosed without access to genetic testing).
- Bainbridge-Ropers Syndrome is in a subcategory of rare disorders called “ultra rare.”
- The features and abilities of people with Bainbridge-Ropers Syndrome varies greatly. We do not yet know why there is a broad spectrum of features and abilities.
- Some of the most common features of Bainbridge-Ropers Syndrome include developmental delay, low muscle tone (hypotonia), intellectual disability, speech delay or absent speech, severe feeding issues including cyclic vomiting, constipation, behavioral and sensory challenges, dental and palate abnormalities, constipation, and seizures.
- Bainbridge-Ropers Syndrome Awareness Day is on February 5 in recognition of the date the paper that defined Bainbridge-Ropers Syndrome as a distinct syndrome was published.
Raise awareness on social media for #brsawarenessday!
Create a custom social media profile frame
Pick from one of several social media frames that you can customize with your own picture on Twibbonize. Choose your frame, add your photo, download the image, and save it as your profile picture on your social media accounts.
Reshare ARRE Foundation content
Follow us on Facebook and Instagram and reshare our Bainbridge-Ropers Syndrome Awareness Day content. #bainbridgeropers #bainbridgeropersawareness #asxl3
Create and share your own content
Use the facts on this page and the graphics below to create your own social media content. If you’re planning a larger campaign, we can help with additional graphics and information. Contact us
Download and share graphics
Select the image to download it for use on your social media channels. Don’t forget to tag us in your posts!
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- Downloadable graphic (square)
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- Downloadable graphic (Facebook)
Additional fundraising and awareness-raising resources include:
- ARRE Foundation: Advancing research for ASXL-related disorders (4-minute video)
- Finding answers through research (45-second video)
