Organization Spotlight: The AVM Alliance

AVM Alliance is a 501(c)(3) charity dedicated to filling the needs of the pediatric Brain AVM & Stroke community, helping parents of children who have been affected by brain vessel disease and Stroke.

The AVM Alliance Story

At age 15, Kyler Lewis suffered a hemorrhagic stroke from a Brain AVM, a congenital vascular disease the family did not know was there from birth. Brain AVMs range in severity from 1 to 6; Kyler’s was a grade 5. A Brain AVM is the first cause of a brain bleed in children, excluding trauma. However, most people have never heard of this rare disease. While on a search for a cure, Kyler’s family realized there was little assistance to support and navigate through a diagnosis of pediatric brain vessel disease and childhood stroke. Doctors need a place of support to refer families and most of the general public has no idea that a child can have a stroke just like an adult.

AVM Alliance was created to fill the needs of the Pediatric AVM / Aneurysm / Stroke community, by helping doctors connect parents & families to the support they need.

The AVM Alliance Goal and Mission

AVM Alliance’s goal is to create a community of support and assistance, and their mission is to:

• educate the public about pediatric stroke (stroke has no age limit);
• show children, who have this condition, that they are not alone;
• provide valuable support and information to help others on their journey;
• raise awareness about this condition;
• fund research for early diagnosis, and treatment, and to work together to find a cure for brain vessel disease.

AVM Alliance Offerings

AVM Alliance offers the following services:

• A one-on-one parent support network connecting parents of children affected by this disease;
• A private parent community group where families can be open, ask questions, share feelings, and learn from the experiences of others;
• A platform to raise community awareness on social media by spreading featuring stories of children diagnosed with brain vessel disease;
• A monthly pediatric stroke podcast at www.avmalliancepodcast.com;
• A monthly international support group that connects parents over Zoom;
• An informative website;
• Hospital handouts & PDF material with information on pediatric stroke and brain vessel disease for doctors to easily download and distribute;
• Collaborations with doctors, hospitals, and stroke organizations across the United States, to educate patients and caregivers through YouTube informational webinars, videos, and podcasts;
• Raising political awareness 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;
• Mailing out campaigns, 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.

Learn more about the AVM Alliance

• Take a look at AVM Alliance’s webpage here;
• To learn more about a brain AVM, click here;
• Check out AVM Alliance’s monthly pediatric stroke podcast here;
• If you would like to get in touch with AVM Alliance, visit https://www.avmalliance.org/contact/.