Brain AVMs are rare but they can have devastating affects if they bleed, causing a hemorrhagic stroke or even death.
Currently there is NO STANDARD OF CARE FOR SCREENING FOR AVMs but there are ways to treat most if they can only be found BEFORE they bleed. Patients and families are in shock and confused. We need change.
We want to solve these problems particularly for the teen and young adult community:
1. support early identification research to save lives and prevent life altering disability
2. serve as the global information hub for the patients, families, community and medical providers from diagnosis through their lifelong recovery
3. advance awarenes
We want to solve these problems particularly for the teen and young adult community:
1. support early identification research to save lives and prevent life altering disability
2. serve as the global information hub for the patients, families, community and medical providers from diagnosis through their lifelong recovery
3. advance awareness to all athletic organizations and coaches to identify signs of pediatric stroke because time matters.
Everything we do is grounded in the effort to minimize the despair, isolation, confusion and fear that every parent or caregiver experiences when their seemingly healthy child suffers a stroke. AVMs are a rare disease so having the right care with doctors who see many patients is important.
We are connecting with doctors across the world
Everything we do is grounded in the effort to minimize the despair, isolation, confusion and fear that every parent or caregiver experiences when their seemingly healthy child suffers a stroke. AVMs are a rare disease so having the right care with doctors who see many patients is important.
We are connecting with doctors across the world that specialize in brain AVMs and post stroke rehabilitation. Everything we learn we will share it here so you can focus on one less thing.
cLIFE4life AVM Research & Rehabilitation is BY PARENTS for PARENTS. We are parents to a teenaged/young adult AVM survivor. We have started this work knowing we will need to rely on the expert medical community to make the impact we plan to have. We will work with academic institutions, industry partners, and other organizations to support
cLIFE4life AVM Research & Rehabilitation is BY PARENTS for PARENTS. We are parents to a teenaged/young adult AVM survivor. We have started this work knowing we will need to rely on the expert medical community to make the impact we plan to have. We will work with academic institutions, industry partners, and other organizations to support interdisciplinary research and accelerate the pace of discovery.
The most important research data will start with the survivors and their caretakers. We need your input to find trends among those who are affected by this rare vascular disease. Our hope is that trends will emerge that will help identify patients that should be referred for brain imaging due to a high possibility of a brain AVM. Early detection can save lives and prevent stroke.
Your donation will help us fund groundbreaking research for AVMs and drive innovation forward. Join us in making a difference!
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Looking back, what do you now think was an early sign of the AVM? Tell us your story, help our research.