AVM Research Foundation

10/04/2026

💙🧡 A Night to Celebrate Service, Purpose & AVM Awareness💙🧡

Friday night was a very special night at Auburn University as so many incredible young women stepped onto the stage for the Miss Auburn University Pageant.

We are especially proud of Brooklynne Orr, who chose to dedicate her community service efforts to the AVM Research Foundation. 💙

For Brooklynne, this cause is deeply personal. 💙 Her beloved grandfather, unfortunately, lost his life to a brain arteriovenous malformation (AVM). Because of that personal connection, Brooklynne understands firsthand the devastating impact an AVM can have on a family.

Her decision to dedicate her community service to AVM Research Foundation is a beautiful way to honor her grandfather’s memory while helping bring greater awareness to AVMs and supporting our mission to advance research, encourage earlier detection, and find safer treatments for future patients and families.

We are so grateful to Brooklynne for helping keep her grandfather’s memory alive through service and for giving the AVM community a voice. 💙

Brooklynne’s decision to use her voice and her platform to bring awareness to arteriovenous malformations (AVMs) means more than she may ever know. AVMs are rare, often hidden, and can have devastating consequences when they are not detected before a rupture. Our foundation was born from our own family’s journey with our son Ryan, and our mission is to help make a difference for future families through AVM awareness, earlier detection, and research toward safer treatments.

It is young women like Brooklynne—who choose to serve, educate and advocate for others—who help carry that mission forward. We are so grateful that she chose AVM Research Foundation as a cause close to her heart. ❤️

Brooklynne, thank you for standing with the AVM community and helping give these families and this rare condition a voice. We are incredibly proud of you and honored to have been part of your journey.

Service is beautiful. Using your platform to help others is even more beautiful.💙

She is planning on having a 5K Walk sometime in the near future to help raise funds for our research! Thank you Brooklynne!

10/03/2026

💙 OCTOBER IS AVM AWARENESS MONTH💙

This month, we stand together for the thousands of individuals and families whose lives have been changed by an Arteriovenous Malformation (AVM).

An AVM is an abnormal tangle of blood vessels in the body (more commonly in the brain or spinal cord) that can rupture without warning, causing hemorrhage, stroke, disability, and sometimes death. Yet so much about AVMs remains unknown — including why they develop, how to identify those at greatest risk, and how we can treat them more safely.

Awareness matters. Research matters. Early detection matters. And hope matters.

At the AVM Research Foundation, our mission is deeply personal. We were founded in honor of our son, Ryan, who suffered a devastating brain hemorrhage from an AVM at just 13 years old. Years later, another brain injury changed his life all over again.

Ryan's journey is why we continue to fight.

We support research focused on understanding the biology of brain AVMs and developing safer treatments and better ways to detect and prevent these devastating events. We believe that the answers are out there — and that continued research can change the future for AVM patients and their families.

This October, we ask you to help us spread awareness.

💙 Share this post.
💙 Talk about AVMs.
💙 Learn the warning signs of a brain hemorrhage.
💙 Support AVM research.
💙 Share the stories of those affected.
💙 Help us give researchers the resources they need to find better answers.

For every family who has heard the words “your loved one has a brain AVM,” we want them to have more hope, more answers, and safer options than families have today.

For Ryan. For every AVM survivor. For those we have lost. And for the families still waiting for answers.

We will keep fighting. We will keep researching. And we will keep believing that one day, AVMs will no longer have the power to change so many lives.

💙 October is AVM Awareness Month. Help us make AVMs impossible to ignore.

09/14/2026

👟 A GREAT FIND FOR ANYONE WHO WEARS A BRACE, AFO, OR ORTHOTIC!💙

As many of you know, our family has learned firsthand how challenging it can be to find shoes that work with braces and orthotics—especially when one foot needs a completely different size than the other.

We recently discovered **BILLY Footwear**, and I wanted to share this resource with other families who may be facing the same challenge.

✨ BILLY offers a Single Shoe Program!✨

That means you can:
• Purchase *just ONE shoe*instead of a complete pair
• Order *two different sizes*for the left and right foot
• Find shoes designed to accommodate AFOs, braces, orthotics and other mobility needs
• Avoid paying for a second shoe that your loved one simply can't use

For example, someone might need a size 12 on one foot to accommodate a brace and a 10.5 on the other foot—and BILLY can accommodate that through their Single Shoe Program.

This is something I wish I had known about sooner! ❤️

BILLY does require first-time customers to contact their Customer Service team for approval before using their single-shoe discount code.

👉 Learn about BILLY's Single Shoe Program here:
[BILLY Footwear — Single Shoe Program](https://billyfootwear.com/pages/how-to-order-a-single-shoe-or-pair-of-single-shoes?utm_source=chatgpt.com)

👟 Shop BILLY Footwear:
[BILLY Footwear](https://billyfootwear.com?utm_source=chatgpt.com)

I hope this helps another family who has struggled with the same thing! Please feel free to share this post with anyone who has a child or adult wearing an AFO, brace, orthotic or prosthetic. Sometimes one little piece of information can make life SO much easier. 💙

— AVM Research Foundation
Supporting research and hope for those affected by brain AVMs.

09/03/2026

🧠 **Advancing AVM Research Right Here in Houston, Texas**

What if the next breakthrough in AVM treatment begins right here in Houston?

At McGovern Medical School at UTHealth Houston, Dr. Roc Chen and his research team are working to better understand arteriovenous malformations (AVMs) and find new possibilities for patients and families facing this rare and devastating condition.

Our family knows firsthand why this research matters.

Our son, Ryan, has suffered two devastating brain injuries—both connected to an AVM. We have watched this rare condition change his life and our entire family’s life in ways we could have never imagined.

But out of something so heartbreaking came a mission:

We don't want another family to have to face what ours has faced.

Through the AVM Research Foundation, we are committed to helping support Dr. Chen’s research and advancing the search for better treatments. Every step forward in the laboratory brings hope to families who desperately need it.

AVMs may be rare, but the people and families affected by them are very real.

And behind every research project is a person.
A son. A daughter. A husband. A wife. A mother. A father.

For us, that person is Ryan. ❤️

AVMs are rare. Research shouldn't be.

Please help us spread awareness of AVMs and the important research taking place right here in Houston. If you would like to help fund this research, you can make a donation through the AVM Research Foundation.

🌐 www.research4ryan.org

Every donation helps us move one step closer to better treatments and more hope for families affected by AVMs.

For Ryan. For the families who are still waiting. For the future.

06/28/2026

🚨 **Mark Your Calendars! The Abilities Expo is Coming to Houston!** 🚨

📅 **July 31 – August 2, 2026**
📍 **NRG Center – Hall E, Houston, TX**

If you or someone you love is living with a disability, brain injury, stroke, AVM, spinal cord injury, cerebral palsy, autism, or another condition affecting mobility or independence, you won't want to miss the **Abilities Expo**!

This incredible event brings together hundreds of exhibitors showcasing:
✅ The latest adaptive equipment and assistive technology
✅ Wheelchairs, mobility devices, and accessible vehicles
✅ Home accessibility products
✅ Therapy and rehabilitation resources
✅ Adaptive sports and recreation
✅ Service dog demonstrations
✅ Informative workshops and presentations
✅ Support organizations and community resources

Best of all... **ADMISSION IS FREE!** 🎉

🚗 **Parking at NRG Center is $25 per vehicle (cashless).**

Although admission is free, **please register online** so the organizers know you're coming and to make check-in faster when you arrive.

👉 Register here:
https://www.abilities.com/houston/register

Whether you're a survivor, caregiver, therapist, healthcare professional, or simply looking for resources and hope, the Abilities Expo is an amazing opportunity to discover new technologies, connect with others, and see what's possible.

Please **LIKE**, **SHARE**, and **TAG** anyone who could benefit from attending. We hope to see many of our AVM Research Foundation families there! ❤️

Register for free Abilities Expo HAS IT ALL for the disability community! Thank you for your interest in this important event and we look forward to meeting you there! Attendees ages 18* and over should complete the form below for free admission. If you have any difficulty registering or if you woul...

06/22/2026

💙 Happy Father’s Day! 💙

Today, the AVM Research Foundation proudly honors and celebrates all fathers—and those who have stepped into a fatherly role in someone's life. Whether you are a father, grandfather, stepfather, mentor, coach, uncle, family friend, or someone who has provided guidance, support, and unconditional care, we celebrate the positive impact you make every day.

Your strength, sacrifice, wisdom, and dedication help shape lives and build stronger families and communities.

We also take a special moment to remember and honor the fathers and father figures who are no longer with us. Though they may be not be physically here with us…their love, lessons, and legacy continue to live on in the hearts of those who cherish them. Today, we celebrate their memory and the lasting influence they have left behind.

To every father and father figure—both here with us and watching over us from above—thank you for the difference you make in our lives.

Wishing you all a Happy Father’s Day filled with love, gratitude, and cherished memories.

— AVM Research Foundation

06/18/2026

💚 TUBE FEEDING FAMILIES – A RESOURCE YOU MAY NOT KNOW ABOUT 💚

If you or a loved one depends on a feeding tube, the Oley Foundation is an incredible nonprofit organization that helps connect patients and caregivers with donated tube feeding formula, supplies, and equipment.

Many families end up with unopened formula, feeding bags, syringes, pumps, and other supplies they no longer need. Through Oley's equipment and supply exchange programs, these items can often be donated to someone who needs them rather than being thrown away.

Whether you're struggling to obtain enough formula, facing insurance delays, or simply looking for support from others who understand the tube-feeding journey, the Oley Foundation is a wonderful resource.

Some ways they can help:
✅ Tube feeding formula exchange
✅ Feeding supplies and equipment donations
✅ Caregiver and patient support
✅ Educational resources
✅ Community connections with other tube-feeding families

Please share this information with anyone who may benefit. No family should have to choose between paying bills and obtaining the nutrition and supplies their loved one needs.

The Oley Foundation: dedicated to enriching the lives of those requiring home intravenous and tube-fed nutrition.

❤️ From one caregiver to another, sometimes the best resources come from people who have walked the same path.

To enrich the lives of those living with home IV nutrition or tube feeding through advocacy, education, community and innovation.

05/10/2026

Happy Mother’s Day to the moms who carry a weight most people will never fully understand — the mothers of children with an AVM.

You have faced fear, uncertainty, hospital rooms, sleepless nights, hard decisions, maybe even the unimaginable loss of a child, and prayers whispered through tears. You have learned how strong love can be when life feels fragile.

Your courage shows up in the quiet moments: advocating for your child, holding their hand through procedures, celebrating every victory, grieving deep losses, and finding hope even on the hardest days.

Today, we celebrate you — not just for what you endure, but for the extraordinary love, strength, and grace you give every single day.

May you feel seen, supported, and deeply appreciated this Mother’s Day. Your child is forever blessed to have you as their mother. 💜

04/30/2026

Please read this family’s story about their son’s AVM journey and keep them in your prayers. We are working incredibly hard to create a safer treatment and have earlier detection!

Son...
Today marks a remarkable milestone - the 11th anniversary of your craniotomy brain surgery on 4/28/15, that lasted 14.5-hour to successfully remove your grade 4 right frontal lobe AVM! Your resilience and unwavering dedication to making every day a little better is genuinely inspiring. Amidst the uncertainty of your seizures, you and Emily face each one you have together and I'm so thankful you have her by your side as your beautiful wife. To the exceptional team of surgeons, compassionate medical staff, kind strangers, loved ones, and friends, along with God and your heavenly angels that stood by and continue to be by your side I'm forever in debt to them for everything they did. Your future shines bright with promise and hope, and I'm so grateful you're here to experience it all. I love you more than words can express, son!! I'm forever grateful to be your mom!

04/23/2026

What is an AVM?

An arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain.

Because of this abnormal connection:
• Blood flow can be disrupted
• Pressure can build
• And in some cases, it can lead to bleeding in the brain (hemorrhagic stroke)

Many people don’t know they have an AVM—until it becomes an emergency.

That’s exactly what happened to our son, Ryan.

In 2015, Ryan suffered a sudden stroke caused by a brain AVM. In an instant, everything changed for our family. What started as a normal day became a fight for his life—and a journey we never expected.

Ryan’s story is the reason the AVM Research Foundation exists.
But we also know we are not alone. There are more families—right now—walking this same unexpected, life-altering path. We wake up every day for them, too.

We are committed to raising awareness so fewer families are caught off guard, and to funding research so one day AVMs can be detected earlier, treated more safely, and ultimately cured.

Awareness can save lives. Ryan’s story—and so many others—are proof.
💙 Help us spread the word.