זרקור על הארגון: ברית ה-AVM
AVM Alliance הוא ארגון צדקה 501(c)(3) המוקדש למילוי צרכי קהילת ילדים המתמודדים עם AVM במוח ושבץ מוחי, ועוזר להורים לילדים שנפגעו ממחלת כלי דם במוח ושבץ מוחי.
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/.
