Who We Are

AVM Alliance is a 501(c)(3) charity dedicated to filling the needs of the AVM community and supporting other charitable and research organizations who make a difference. AVM Alliance is dedicated to helping parents of AVM / Aneurysm children who have been affected by brain vessel disease as well as assist those affected by Traumatic Brain Injury and Stroke. 

As a collective of passionate individuals, we strive to foster a sense of belonging and camaraderie among AVM warriors and their loved ones. Whether you are a patient, caregiver, or medical professional, our platform offers a safe space to share experiences, find valuable insights, and connect with others on a similar journey.

Our goal is to create a community of support and assistance. Our mission is to educate the public that stroke has no age limit, show children who have this condition they are not alone, provide valuable information to help others on this journey, and raise awareness– working together to find a cure for brain vessel disease.

Watch our introduction video “AVM Alliance: Our Story”

What We Offer

  • One-on-One Parent Support Network connecting parents of children affected by this disease.

  • Private Parent Community Group where families can be open, ask questions, share feelings, and learn from the experience of others.

  • Platform to Raise Awareness on Social Media by spreading community awareness and featuring stories of children diagnosed with brain vessel disease. (www.avmalliance.com)

  • Monthly Pediatric Stroke Podcast.

  • Monthly Mom’s Support Group  that meets over Zoom.

  • Hospital Handouts & PDF Material or doctors to easily download and distribute.

  • Collaborations with doctors, hospitals and stroke organizations to provide information and education through Patient YouTube informational webinars, videos, and podcasts throughout the United States.

  • Conversing with Government Officials through letters, meetings, and formal proclamations to bring the condition of childhood stroke and brain vessel disease to those who have the opportunity to make a real difference in the lives of children and their families.

  • Community Connections: We work with the International Alliance for Pediatric Stroke (IAPS), The Aneurysm and AVM Foundation, The Joe Niekro Foundation, The American Heart / Stroke Association, and The AVM Research Foundation. We are also proudly the only pediatric vascular disease charity member of the International Pediatric Stroke Organization (IPSO).

  • Mail Out Campaigns spreading awareness of brain vessel disease, raising funds to support research, sending gifts of support to children diagnosed with brain vessel disease & their siblings, sending encouragement to those in recovery, and grief boxes to families whose children have gained their wings.

Outreach Projects

  • Butterfly Hugs at the Hospital: Hospital gift packages for current warriors.

  • Cocooned in Care: Wings Of Compassion: grief package for parents & siblings whose stroke warrior has gained their wings.

  • Piggy’s Bookshelf: Books for Brave Ones: A book about strength and courage delivered to AVM children during their recovery. 

  • Piggy’s Wings of Hope Mail: Mailed to kids newly diagnosed with brain vessel disease. 

  • Certificates of Bravery: sent to children to show them we recognize all they are going through and commend the hard fought efforts to recovery. 

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