AVM Alliance is a Non-Profit 501(c)(3) Charity, created to educate the public about pediatric stroke, show children who have this condition that they are not alone, provide valuable support and information to help families on their journey, raise awareness about this condition, and fund research for early diagnosis, treatment and a cure for brain vessel disease.
OUR 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 AVM’s range in severity from 1 to 6; Kyler’s was a grade 5. A Brain AVM is the #1 cause of a brain bleed in children, excluding trauma. However, most people have never heard of this disease. While on a search for a cure, Kyler’s family realized there is little assistance to support and navigate through a diagnosis of pediatric brain vessel disease and childhood stroke. Doctors needed 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 through helping doctors connect parents & families who have been affected by brain vessel disease, traumatic brain injury, and stroke to the support they need.
WHAT WE OFFER:
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One-on-One Parent Support Network connecting parents of children affected by this disease.
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Private Parent Community Group where families can be open, ask questions, share feelings, and learn from the experience of others.
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Platform to Raise Awareness on Social Media by spreading community awareness and featuring stories of children diagnosed with brain vessel disease.
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Monthly Pediatric Stroke Podcast
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Monthly Support Group connecting parents internationally that meets over Zoom.
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An Informative Website: www.avmalliance.org
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Hospital Handouts & PDF Material with information on pediatric stroke and brain vessel disease for doctors to easily download and distribute.
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Collaborations with doctors, hospitals and stroke organizations to provide information and education through Patient YouTube informational webinars, videos, and podcasts throughout the United States.
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Public Awareness, through letters, meetings, and formal proclamations with state and local government 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.
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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 a proud 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.
CURRENT MAIL OUT 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
WHY YOUR HELP IS NEEDED: At AVM Alliance, our mission to support parents and children diagnosed with brain vessel disease is fueled entirely by the community. It is only through heartfelt donations received that we are able to bring hope, comfort, and much- needed assistance to those who need it most. Every dollar contributed makes a huge difference in funding research for a cure and helping families facing the challenges of this complex condition. Only with support can we offer a lifeline of resources, guidance, and emotional assistance to parents and their young warriors. We need help to transform fear into resilience, uncertainty into strength, and isolation into a network of compassion. AVM Alliance is the only pediatric hemorrhagic stroke organization of its kind. By supporting AVM Alliance, you become a vital part of our community, making a lasting impact on the lives of these courageous families. Financial contributions not only provide a support that is tangible but also ignite a spark of hope that illuminates a child’s darkest days. Every child facing brain vessel disease is in need of support, but only with financial backing can AVM Alliance offer the necessary resources showing children they are cared about and there is a path towards brighter tomorrows. By joining forces, we can create an even greater impact to raise awareness that #StrokeHasNoAgeLimit.
