Bohring-Opitz Syndrome Foundation, Inc.

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Bohring-Opitz Syndrome Foundation, Inc.

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The Bohring-Opitz Syndrome Foundation, Inc.- a 501c3 non-profit organization- is dedicated to improving the lives of people affected by BOS.

https://www.paypal.com/us/fundraiser/charity/1885855 Bohring-Opitz Syndrome is an extremely rare genetic syndrome. There are approximately 300 cases in the world. This syndrome is diagnosed by genetic testing and is a mutation in the ASXL1 gene. The leading cause of death is respiratory infections. Patients with BOS can have feeding difficulties, recurring respiratory infections, sleep apnea, developmental delay, failure to thrive, abnormal hair density and length, Wilm’s Tumors, brain abnormalities, silent aspiration, and the list goes on. Having a child with a rare genetic syndrome is not easy and we do offer support for parents. BOS parents who want to join a friendly and welcoming group please feel free to send us a private message and we will be glad to connect you with the group. www.facebook.com/groups/BohringOpitz

11/05/2026

11/01/2026

SPONSOR A BOS APPLICANT!

Today, applications officially open for the Bohring-Opitz Syndrome Foundation Financial Scholarship Program!

As families apply, we need YOUR help to make more scholarships possible!

Hear from past recipients:
“This support has helped us feel more secure and has already become a life saver.”
“It may seem like a simple gift, but his iPad brings him a lot of joy.”

From adaptive equipment to essential medical supplies, these scholarships make a lasting difference.

Every applicant has a story. Every donation makes an impact.

Will you help us support more BOS families by sponsoring an applicant or contributing toward a scholarship?

Together, we can turn hope into reality!

https://www.paypal.com/ncp/payment/946ABZ6PD93JC

11/01/2026

We hope everyone had a Happy Halloween! 👻🎃

Our BOS warriors were looking BOO-tiful in their Halloween costumes! From superheroes to princesses and everything in between, each one brought a little extra magic to Halloween!

Thank you to all our families who shared these special moments with us!

10/18/2026

Awareness is about so much more than sharing information. It’s about creating connections, bringing families together, and reminding others they are not alone.

Because someone shared their story, another family found a connection they may have never known existed.

This is the power of raising awareness for Bohring-Opitz Syndrome. Every post, every share, and every conversation has the potential to reach someone who needs it.

You never know who your story may reach or whose life it may touch.

Keep sharing. Keep advocating. Keep spreading awareness. Together, we are making a difference! 💙⭐️

Share your story and be apart of the BOS Spotlight

https://docs.google.com/forms/d/e/1FAIpQLSeM3Zhvq1j6O_jiT2pwmTf-Vd7n6GDbmjDVGhApIQxKTopAfQ/viewform

When Jill Morris agreed to be featured in an article about living with Bohring-Opitz Syndrome (BOS), along with her son Vaughan who is diagnosed with the rare condition, she had no idea the impact it would have on another local family in her hometown of Warrenton, Virginia. Jill had recentl

09/22/2026

We are currently reviewing all submissions and will be reaching out soon! 💙⭐️

If you’re still interested in volunteering with us, there’s still time! Please complete the volunteer form so we can learn more about how you’d like to get involved. 😊

https://forms.gle/N7RDe17JhSaXgGvCA

09/19/2026

Back to School with BOS!

Wishing all of our BOS students a wonderful school year filled with learning, growth, inclusion, and lots of smiles!

Here’s to an amazing year ahead! ⭐️💙

09/03/2026

🧬 Help Move ASXL Research Forward!

Have you joined the ASXL Registry yet? If not, now is a great time! Every family who participates helps researchers better understand ASXL-related conditions, including Bohring-Opitz Syndrome, and provides valuable information that can help shape future research.

📋 Join the ASXL Registry and make sure your family’s experience is represented.
📬 And don’t forget to check out and share the latest August ASXL newsletter!

Sharing helps spread awareness, connect more families with the ASXL community, and strengthen the research that gives us hope for the future.

Our stories. Our data. Our voices. Together, we can help move research forward.

Please share and encourage other ASXL families to participate! 💙⭐️

For more information email :[email protected]

09/02/2026

Miles for BOS — Final Update! 💙⭐️

What an incredible month! Together, we completed 504.1 miles/laps and raised an amazing $5,755 for the BOS Foundation!

A huge THANK YOU to Kate Abeln for organizing Miles for BOS and making this fundraiser possible!

Thank you to everyone who walked, ran, rolled, swam, donated, and shared. We are so grateful for our amazing BOS community!

04/06/2026

Today we recognize Bohring-Opitz Syndrome Awareness Day 💙⭐️
Bohring-Opitz Syndrome (BOS) is a rare genetic disorder affecting approximately 300 individuals worldwide. Though rare, this community is incredibly strong, resilient, and deeply loved.

Today, we wear gold and navy to show our support, raise awareness, and stand beside the families and individuals impacted by BOS.

Together, we can help bring visibility, understanding, and hope.

Learn more or support the mission:
www.bos-foundation.org

Address

1310 Egypt Road, PO Box 832
Oaks, PA
19456

Website

http://www.bos-foundation.org/, https://www.bonfire.com/store/bohring-opitz-syndrome/, https://milesforbos.lovable.app/

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