Generated by All in One SEO v4.9.10, this is an llms.txt file, used by LLMs to index the site. # AVM Alliance ## Sitemaps - [XML Sitemap](https://www.avmalliance.org/sitemap.xml): Contains all public & indexable URLs for this website. ## Posts - [Blog](https://www.avmalliance.org/blog/) - [Webinar Stroke Has No Age Limit: Dr. Martinez neurointerventional radiologist](https://www.avmalliance.org/webinar-stroke-has-no-age-limit-dr-martinez-neurointerventional-radiologist/) - Dr. Mesha Martinez, a neurointerventional radiologist, presented her practice's approach to treating brain and spinal conditions through minimally invasive procedures and consultations. She shared detailed case studies and explained her work on CSF drainage issues, venous stenosis, and the use of various medications for treating AVMs and related conditions. The discussion covered the complexities of - [When the Bleeding Stops: What Pediatric Hemorrhagic Stroke Care Still Doesn’t Provide](https://www.avmalliance.org/when-the-bleeding-stops-what-pediatric-hemorrhagic-stroke-care-still-doesnt-provide/) - Doctors are taught to save lives—but many don’t always see the life in front of them. As the parent of a child who suffered a hemorrhagic stroke, I’ve witnessed the miracle of expert intervention. I’ve also lived the aftermath: confusion, fragmentation, and silence. Families are often left piecing together care plans with no roadmap, no - [When the Whole Picture Is Missing: A Parent’s Perspective on the Gaps in Pediatric Stroke Care](https://www.avmalliance.org/when-the-whole-picture-is-missing-a-parents-perspective-on-the-gaps-in-pediatric-stroke-care/) - Doctors are taught to save lives—but I am not convinced that the majority (or all) are always taught to truly see the life that is before them. As a parent of a child who suffered a hemorrhagic stroke, I’ve witnessed the miracle of expert intervention. I’ve also lived the reality of what comes next: confusion, - [The Story of AVM Alliance](https://www.avmalliance.org/the-story-of-avm-alliance/) - My family’s life changed forever on April 10, 2020, the day my 15-year-old son, Kyler, suffered a brain bleed, and I learned a child can have a stroke just like an adult. An MRI revealed my son was born with a Parietal / Occipital / Thalamic brain arteriovenous malformation (AVM) about the size of a - [Hereditary Hemorrhagic Telangiectasia: Basic info for Parents](https://www.avmalliance.org/hereditary-hemorrhagic-telangiectasia-basic-info-for-parents/) - Hereditary Hemorrhagic Telangiectasia, also known as HHT, is a genetic disorder that causes malformed blood vessels and the development of telangiectasis and AVMs. It can cause an array of symptoms such as nosebleeds, trouble breathing, and bleeding from the gut as well as many more issues. What is HHT? HHT is a condition that affects - [MRI vs. a CT Scan](https://www.avmalliance.org/mri-vs-a-ct-scan/) - Magnetic Resonance Imaging (MRI) and Computed Tomography (CT) scans are both diagnostic medical imaging tests used to visualize internal structures of the body, but they differ in a number of ways, including: Imaging Technique: MRI uses strong magnetic fields and radio waves to produce detailed images of internal structures, while CT scans use X-rays and - [What is a Seizure: General Information](https://www.avmalliance.org/what-is-a-seizure-general-information/) - A seizure is a sudden, uncontrolled electrical disturbance in the brain that can cause a variety of symptoms. A seizure can have many different symptoms including convulsions, muscle contractions, partial paralysis, confusion, staring off into space and even loss of consciousness to name a few. Seizures are a symptom of a neurological condition, such as - [Children & Brain Aneurysms](https://www.avmalliance.org/children-brain-aneurysms/) - Aneurysms can occur anywhere in the body, including in the brain, where they are known as cerebral aneurysms. An aneurysm is a bulge or ballooning in a blood vessel caused by a weak spot in the vessel wall. When an aneurysm ruptures, it can cause bleeding in the brain (hemorrhagic stroke), which can be life-threatening. - [Avastin chemotherapy: A Treatment for Brain Swelling from SRS](https://www.avmalliance.org/avastin-chemotherapy-a-treatment-for-brain-swelling-from-srs/) - Avastin (bevacizumab) is a type of chemotherapy medication that is sometimes used to reduce brain swelling when the swelling from Gamma Knife (or other stereotactic radiosurgery) radiation treatment of an AVM becomes excessive and is not successfully controlled by steroids. Avastin is classified as a monoclonal antibody, which means it is designed to specifically target - [When Different Parts of the Brain Are Damaged](https://www.avmalliance.org/when-different-parts-of-the-brain-are-damaged/) - Different parts of the brain can cause different side effects if they are damaged or affected. The specific side effects that occur depend on the location and extent of the damage in the brain. Some common examples include:Frontal Lobe: The frontal lobe is responsible for a wide range of functions, including decision-making, planning, problem-solving, and - [Icing Smiles: Baking a Difference for Kids who have a Rare Disease](https://www.avmalliance.org/icing-smiles-baking-a-difference-for-kids-who-have-a-rare-disease/) - Icing Smiles is a non-profit organization that provides custom cakes to families of children who are suffering from serious illnesses. The organization was founded in 2009 by Tracy Quisenberry, a mother who wanted to use her baking skills to bring a little bit of joy to families who were going through difficult times. The mission - [The Joe Niekro Foundation - Helping Aneurysm Survivors](https://www.avmalliance.org/the-joe-niekro-foundation-helping-aneurysm-survivors/) - The Joe Niekro Foundation is a non-profit organization that was founded in 2008, after the death of Joe Niekro, a Major League Baseball pitcher. The foundation's mission is to raise awareness about brain aneurysms and to provide education and support for those affected by this condition. A brain aneurysm is a bulging or ballooning in - [The Aneurysm and AVM Foundation Explained](https://www.avmalliance.org/the-aneurysm-and-avm-foundation-explained/) - The Aneurysm and AVM Foundation (TAAF) is a non-profit organization that aims to provide support, education, and resources to individuals and families affected by aneurysms and AVMs (arteriovenous malformations). The foundation's mission is to increase awareness and knowledge about these conditions, and to promote research and access to the best available care for patients. An - [Explaining Gamma Knife Radiation as a Treatment for Brain AVMs](https://www.avmalliance.org/explaining-gamma-knife-radiation-as-a-treatment-for-brain-avms/) - Gamma Knife radiation therapy is a non-invasive treatment option for brain AVMs (arteriovenous malformations) that uses high doses of radiation to target and destroy the abnormal blood vessels. The Gamma Knife is a specialized device that delivers radiation to a specific area of the brain with extreme precision, minimizing damage to surrounding healthy tissue. There - [Service Dogs for Children who have Survived a Stroke](https://www.avmalliance.org/service-dogs-for-children-who-have-survived-a-stroke/) - Service animals can play an important role in assisting children who have had a stroke. Ischemic stroke is caused by a blockage in a blood vessel that supplies blood to the brain. Hemorrhagic stroke is caused by a break in a blood vessel resulting in blood spilling into the brain. Children who have had a - [What is a Brain AVM & Who is this Butterfly Pig?](https://www.avmalliance.org/what-is-a-brain-avm-who-is-this-butterfly-pig/) - A brain AVM (arteriovenous malformation) is a tangle of abnormal blood vessels connecting arteries and veins in the brain. These vessels bypass the normal capillary system, allowing blood to flow directly from the arteries into the veins. This can lead to an increased risk of bleeding in the brain, known as a hemorrhagic stroke, and - [Introductory Information on Pediatric Stroke](https://www.avmalliance.org/introductory-information-on-pediatric-stroke/) - General things to think about: Pediatric stroke patients under the age of 18 face a variety of challenges. One of the main challenges is the lack of understanding and awareness about pediatric stroke, which can make it difficult for children and their families to get the diagnosis and treatment they need. Pediatric strokes can be - [The Warning Signs of Pediatric Stroke](https://www.avmalliance.org/the-warning-signs-of-pediatric-stroke/) - Dash says. "When it comes to Pediatric Stroke, it is important to remember B.E. F.A.S.T.!" The signs of a pediatric stroke can vary depending on the child's age and the type of stroke they are experiencing. However, some common signs to look out for include: Balance: Sudden weakness or numbness on one side of the body, ## Pages - [Home](https://www.avmalliance.org/) - The 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. - [Donate](https://www.avmalliance.org/donate/) - Giving Why Donate?At AVM Alliance, we are committed to making a positive difference in the lives of families dealing with AVM diagnoses. Your generous donation can help us achieve this mission and create a brighter future for those affected by this challenging condition.Your contribution enables us to provide crucial support and resources to individuals and - [Hospitals & Pediatric Stroke Specialists](https://www.avmalliance.org/hospitals-pediatric-stroke-list/) - Hospitals & Pediatric Stroke Specialists This list of doctors, hospitals and medical facilities, is meant to be a starting spot only for families who are researching for providers who focus on brain vessel disease and stroke. AVM Alliance does not offer medical advice and does not endorse any medical professional or group listed. Any medical - [Events](https://www.avmalliance.org/all-events/) - [em_events] - [Performers](https://www.avmalliance.org/performers/) - [em_performers] - [Venues](https://www.avmalliance.org/venues/) - [em_sites] - [Booking](https://www.avmalliance.org/booking/) - [em_booking] - [User Profile](https://www.avmalliance.org/user-profile/) - [em_profile] - [Event Types](https://www.avmalliance.org/event-types/) - [em_event_types] - [Submit Event](https://www.avmalliance.org/submit-event/) - [em_event_submit_form] - [Booking Details](https://www.avmalliance.org/booking-details/) - [em_booking_details] - [Event Organizers](https://www.avmalliance.org/event-organizers/) - [em_event_organizers] - [Login](https://www.avmalliance.org/login/) - [em_login] - [Register](https://www.avmalliance.org/register/) - [em_register] - [Meet the Team](https://www.avmalliance.org/meet-the-team/) - AVM Alliance Team Raylene Lewis President & Director Kyle Lewis Vice President Kyler Lewis Board Member Billene Cannon Board Member Heather Golladay Manager & Designer Rilynn Lewis Volunteer AVM Alliance Medical Board Dr. Rachel Vassar, MD Pediatric NeurologistUniversity of California San Francisco Dr. Patricia Musolino, MD, PhD Critical Care & Vascular NeurologistMassachusetts General Hospital Dr. - [Campaigns](https://www.avmalliance.org/campaigns/) - AVM Alliance Fundraising Home / Campaigns - [Fuel The Mission Fund (General Fund)](https://www.avmalliance.org/fuel-the-mission-fund/) - Top Donation $2,500.00 Average Donation $253.63 Behind every binder mailed, every stuffed animal delivered, and every webinar hosted is a strongfoundation that makes it possible.Our Fuel the Mission Fund covers the essentials — shipping, technology, outreach, and dailyoperations. It’s the engine that keeps every program moving forward. We are a 100% volunteer non-profit.Funds go directly - [Holiday Stuffy Mail Out](https://www.avmalliance.org/campaigns/holiday-stuffy-mail-out/) - Top Donation $150.00 Average Donation $87.50 The holidays can feel especially lonely for children in hospitals or recovering at home. While other kidscelebrate, these warriors spend their days in sterile rooms or facing treatments and therapies that arescary and sometimes painful.With your help, we will mail 165 cheerful stuffy packages this season. Each includes a - [Messages of Hope: Notes of Encouragement](https://www.avmalliance.org/campaigns/messages-of-hope-notes-of-encouragement/) - Top Donation $25.00 Average Donation $25.00 A simple note can mean the world to a child facing tough hospital days. Every message says: “You arebrave. You are loved. You are not forgotten.”This campaign lets us send 250 handwritten notes of encouragement to children across the country.$10 → Sends 5 notes of encouragement$50 → Sends 25 - [General Fundraising Campaign](https://www.avmalliance.org/campaigns/fundraising-campaign/) - Top Donation $50.00 Average Donation $20.33 Behind every binder mailed, every stuffed animal delivered, and every webinar hosted is a strongfoundation that makes it possible.|Our Fuel the Mission Fund covers the essentials — shipping, technology, outreach, and dailyoperations. It’s the engine that keeps every program moving forward. We are a 100% volunteer non-profit.Funds go directly - [Courage Delivered: Warrior Strong Packages](https://www.avmalliance.org/campaigns/courage-delivered-warrior-strong-packages/) - Top Donation $100.00 Average Donation $100.00 Hospital stays, rehab, and long treatments can make a child feel forgotten. Warrior Strong Packagesarrive at just the right time, filled with comfort items, fun surprises, and a reminder of their strength.With your support, we will deliver 125 packages to children in hospitals, rehab centers, and at homeduring treatment - [Care Binders: The Family Lifeline Binder](https://www.avmalliance.org/campaigns/care-binders-the-family-lifeline-binder/) - Top Donation $1,700.00 Average Donation $793.33 When a child is diagnosed, families are flooded with papers, appointments, and decisions. It’soverwhelming and easy to feel lost.Our Family Lifeline Binders provide clarity and order. With sections for hospital stays, therapies, andinsurance, they help families regain control in the middle of chaos.$45 → Provides 1 Lifeline Binder to - [Knowledge Saves Lives: Hospital Handouts](https://www.avmalliance.org/campaigns/knowledge-saves-lives-hospital-handouts/) - Top Donation $125.00 Average Donation $125.00 Minutes matter when a child has a stroke — yet families and even EMTs often don’t recognize the signs. This campaign funds the mailing of educational handouts to major hospitals and EMT groups nationwide.These resources explain the signs of pediatric stroke and brain vessel disease, and how families can - [Friendship Builders: The Courage Crew](https://www.avmalliance.org/campaigns/friendship-builders-the-courage-crew/) - Top Donation $500.00 Average Donation $431.00 Kids with brain vessel disease often miss out on the simple joy of playing with friends who understand.Our Courage Crew program gives them a safe space to laugh, connect, and know they are not alone.Led by a professional therapist, these monthly game nights build resilience, confidence, and friendshipsthat last.• - [Wings of Comfort: Parent Support Group](https://www.avmalliance.org/campaigns/wings-of-comfort-parent-support-group/) - Top Donation $100.00 Average Donation $100.00 When a child passes away, parents face unimaginable grief. No one should have to carry that pain alone.Our Wings of Comfort Support Group provides a professional-led space for parents of children whonow have their wings. Together, families find compassion, guidance, and a safe place to heal.$150 → Covers a - [Warrior Stories](https://www.avmalliance.org/warrior-stories/) - Warrior Stories Reset Warrior Search Note: To have your AVM Warrior featured here, please contact in**@*********ce.org - [Donation Confirmation](https://www.avmalliance.org/donation-confirmation/) - [Donation Failed](https://www.avmalliance.org/donation-failed/) - We're sorry, your donation failed to process. Please try again or contact site support. - [Donor Dashboard](https://www.avmalliance.org/donor-dashboard/) - [AVM Alliance Ambassadors](https://www.avmalliance.org/avm-alliance-ambassadors/) - AVM Alliance Ambassadors Coming soon! - [Warrior Stories: In Heaven](https://www.avmalliance.org/warrior-stories-in-heaven/) - Warrior Stories: In Heaven In Loving Memory: Brayden Odell Facebook-f Tiktok From Brayden’s Mother: Until January 22nd, 2021, our 11-year-old Brayden led a healthy and vibrant life. He adored school, cherished his siblings, friends, and family, and exuded generosity and compassion. Brayden found joy in skating outdoors and playing PS4 in our room. Then, out - [Warrior Stories: On Earth](https://www.avmalliance.org/warrior-stories-on-earth/) - Warrior Stories: On Earth Kyler Lewis Facebook-f Tiktok Kyler Lewis suffered a hemorrhagic stroke from a grade 4 / 5 brain arteriovenous malformation (AVM) in 2020 at age 15. After the stroke, memory and neuro fatigue became a big problem. He has undergone gamma knife radiation & chemotherapy to shrink the size of his AVM & - [Medical Studies & Trials](https://www.avmalliance.org/enroll-in-medical-studies-trials/) - Medical Studies & Trials Explore opportunities for medical studies and trials focused on children with AVMs. Discover ongoing research initiatives that aim to advance our understanding of pediatric AVMs and improve treatment options.We currently have two opportunities!1. For children who had a stroke when they were born (I-AQUIRE):Each year, an estimated 3400+ infants in the - [Brazos Valley Gives](https://www.avmalliance.org/brazos-valley-gives/) - Brazos Valley Gives Every child deserves a chance at a hopeful and bright future. Tragically, stroke stands as the 6th leading cause of death among children. But did you know that many don’t even realize children can suffer from a stroke? The phrase, “Stroke Has No Age Limit,” needs to be on every parent’s and - [AVM Alliance Video Library](https://www.avmalliance.org/avm-alliance-video-library/) - AVM Alliance Video Library AVM Related Video Resources 17 Videos Aphasia Explained 3:41 A Visual Example of Clonus 0:41 Brain Vessels MRI & CT Terms Explained 17:48 Baclofen Pumps Explained 6:26 Diagnosis of Inoperable Large Grade AVM 20:51 Different type of Seizures Explained 10:17 Dystonia Explained 5:07 Frontal Lobe Explained 1:31 Gamma Knife Radiosurgery Explained - [Helpful Organizations](https://www.avmalliance.org/helpful-organizations/) - Helpful Organizations Discover a curated collection of organizations and resources that provide valuable support and information to parents navigating the challenges of unique health conditions. Medical Mom ThoughtsOne Mindful Mama: FacebookPrograms Your Child May Qualify ForMake A Wish Foundation https://wish.org/refer-a-childBeads of Courage – https://beadsofcourage.org/Icing Smiles – https://www.icingsmiles.org/refer-a-family/A Kid Again – https://akidagain.org/Team Luke Hope for Minds – https://www.teamlukehopeforminds.org/ - [Helpful Resources](https://www.avmalliance.org/helpful-resources/) - Helpful Resources Our “Resilience Resources” is a curated collection designed to support AVM families in times of challenge and change. Here, you’ll find inspiring books, enlightening videos, and uplifting movies that foster strength, healing, and connection. Help us to grow this section by sending us your own recommendations!Books: My Stroke of Insight by Jill Taylor, - [Downloadable Resources](https://www.avmalliance.org/downloadable-resources/) - Downloadable Resources Downloadable Resource FliersFor the convenience of both medical professionals and patients, we also provide downloadable resource fliers in both English and Spanish. With a few clicks, you can access these digital materials, enabling you to effortlessly educate and support your patients on AVM-related topics.📄 Download the Hospital Handout – English Version📄 Download the - [Aneurysm & AVM Awareness 5K](https://www.avmalliance.org/aneurysm-and-avm-awareness-5k/) - Aneurysm & AVM Awareness 5K Join the Joe Niekro Foundation’s virtual 5K! Walk, Run, Cycle or Roll to help us raise AVM and aneurysm awareness, fund medical research and connect patients and caregivers with the community and resources they need to thrive! We’re raising money for Team AVM Alliance for the 5K and would love your - [Contact](https://www.avmalliance.org/contact/) - Contact Us Contact AVM Alliance Reach out to us via our contact form, and together, we’ll provide the support and guidance you need in your AVM journey. You are not alone; AVM Alliance is here for you! Email Us in**@*********ce.org Get Support Join The AVM Alliance Support Network Join Our Online Community AVM Alliance Facebook - [AVM Alliance Support Network](https://www.avmalliance.org/avm-alliance-support-network/) - AVM Alliance Support Network Empowering Parents Through the JourneyFacing an arteriovenous malformation (AVM) diagnosis for your child can be an overwhelming experience. At AVM Alliance, we understand the challenges you may encounter on this journey. That’s why we are excited to introduce our AVM Alliance Support Intake Form, designed to provide unwavering support to parents - [Embolization of AVM](https://www.avmalliance.org/treatment-options-explained/embolization-of-avm/) - Embolization of AVM An AVM is a complex condition characterized by abnormal connections between arteries and veins in the brain. Embolization is a minimally invasive procedure used to treat AVM by blocking the abnormal blood vessels and reducing the risk of complications. EXAMPLE VIDEO OF AN EMBOLIZATION BLOOD FLOW AFTER AN EMBOLIZATION What is Embolization - [Surgical Resection for AVM](https://www.avmalliance.org/treatment-options-explained/surgical-resection-for-avm/) - Surgical Resection for AVM A brain AVM is a rare and complex condition where abnormal connections between arteries and veins form in the brain, resulting in potential serious health risks. Surgical resection is a treatment option in some situations.What is Surgical Resection for AVM?Surgical resection, also known as brain AVM removal, is a delicate and - [Stereotactic Radiosurgery](https://www.avmalliance.org/treatment-options-explained/stereotactic-radiosurgery-gamma-knife-cyberknife/) - Stereotactic Radiosurgery Stereotactic Radiosurgery, which commonly involves the use of Gamma Knife or CyberKnife treatments, is a non-invasive treatment option for various brain conditions, including brain arteriovenous malformations (AVM). This precise and targeted approach delivers high doses of radiation to the AVM while sparing surrounding healthy tissue.What is Stereotactic Radiosurgery?Stereotactic Radiosurgery is a specialized radiation therapy - [Podcast](https://www.avmalliance.org/podcast/) - AVM Alliance Podcast The AVM Alliance Podcast was created for parents who are taking care of a medically complex child including those who have been diagnosed with epilepsy or rare disease. This podcast has a slight focus on pediatric stroke, Brain AVM / Aneurysm (brain vessel disease) and traumatic brain Injury (TBI). The goal is - [Who We Are](https://www.avmalliance.org/who-we-are/) - 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 - [Resources](https://www.avmalliance.org/resources/) - AVM Alliance Resources Hospitals & Pediatric Stroke Specialists Explore a comprehensive directory of leading hospitals and specialists specializing in AVM and Pediatric Stroke care. AVM Research Articles Summaries Stay up-to-date with the latest advancements in AVM research through our curated collection of article summaries. AVM Glossary of Terms Enhance your understanding of AVM-related medical concepts - [In The Media](https://www.avmalliance.org/media/) - AVM Alliance - In The Media AVM Alliance Collaboration with Mass General Hospital: https://youtu.be/CVOsglobH-wStroke Busters by UT Health: https://podcasters.spotify.com/pod/show/uthealthstroke/episodes/A-Cure-For-Kyler—Pediatric-Stroke-Patient-Story-e1ntcjr/a-a8hk3ii Church/ Kyler Lewis’s Story https://youtu.be/yxhHzlwcPBU AVM Alliance on Know Stroke: https://youtu.be/pSYVCzUGZXs AVM Alliance Podcast Playlist on Youtube: https://www.youtube.com/playlist?list=PLy3hk0Ikz9xUUw3AZX-SUIDnyiMbQnuUhKyler and Raylene Lewis: Pediatric Stroke Advocates: https://myaggienation.com/kyler-and-raylene-lewis-pediatric-stroke-advocates/video_67b4d5f0-373b-55c0-bb9f-63c6567ea951.html Kyler Lewis AHA Pediatric Stroke Hero 2022: https://youtu.be/jC0mjhrWxYw Kyler Lewis News: https://www.kbtx.com/2020/10/19/college-station-family-raising-brain-avm-awareness/https://www.kxxv.com/brazos/college-station-teen-survives-stroke-becomes-national-hero-for-asahttps://www.kagstv.com/article/news/health/college-station-teen-kyler-lewis-is-the-asa-pediatric-stroke-hero-for-2022/499-4db39754-1b89-4447-b5b0-cd6efb837716https://www.cbsnews.com/sanfrancisco/news/hundreds-march-along-sf-waterfront-raise-awareness-rare-brain-disorders/ - [Get Involved](https://www.avmalliance.org/get-involved/) - AVM Alliance: Get Involved Help Fund Our Cause Support the AVM Alliance with a one-time or recurring donation, helping us to fulfill our mission to provide vital resources, emotional support, and essential services to AVM warriors and their families. Volunteer AVM Alliance Support Specialist Become a Volunteer Support Specialist and play a crucial role in - [Recruit Participants](https://www.avmalliance.org/new-study-or-trial-call-for-participants/) - Recruit Participants For Study or Trial Calling all medical professionals conducting trials or studies! Our platform offers you the opportunity to request participants for your important research. By utilizing our recruitment form, we will connect you with Pediatric Stroke Survivors or Brain Vessel Disease patients eager to contribute to advancements in treatment and management. Name of - [Treatment Options Explained](https://www.avmalliance.org/treatment-options-explained/) - Treatment Options Explained Dealing with a brain arteriovenous malformation (AVM) can be a daunting experience for both parents and young adults. Understanding the available treatment options is crucial to make informed decisions and navigate this challenging journey. In this comprehensive guide, we will explore the four main treatment options for AVMs, focusing on clarity and - [Monitoring the AVM (No Treatment)](https://www.avmalliance.org/treatment-options-explained/monitoring-the-avm-no-treatment/) - Monitoring the AVM (No Treatment) Sometimes, when someone has a brain AVM, it’s actually better to not do any special treatment and just keep an eye on it. This is because if doctors try to remove the AVM, it could be risky and cause more harm than good. So, they choose to monitor the AVM because - [TAAFWALK 2023](https://www.avmalliance.org/taafwalk-2023/) - TAAFWALK 2023 Designed to honor the extraordinary commitment of TAAFWalkers throughout the years, Over the Edge is an activation event—Meaning that as TAAFWalk reaches specific benchmarks, a reciprocal amount of rappelers will be “activated,”or qualified, to go Over the Edge.Our goal is ambitious-with $150,000 raised by TAAFWalk, all 92 rappelers can be activated in honor of our - [Volunteer Support Specialist](https://www.avmalliance.org/volunteer-support-specialist/) - Volunteer Support Specialist Thank you for your interest in being a volunteer Support Specialist with AVM Alliance. Our one-on-one support program is designed to match individuals and families with others who are experiencing the same or similar challenges. It can be a rewarding experience to help someone who is just startng out on this journey. - [Nominate A Warrior](https://www.avmalliance.org/nominate-a-warrior/) - Nominate A Warrior Recognizing the incredible courage of young warriors facing the challenges of brain vessel disease, traumatic brain injury, stroke, and AVM, the AVM Alliance presents certificates for bravery, courage, and determination. These certificates symbolize the remarkable strength, hard work, and resilience exhibited by these children on their journey. Each certificate stands as a - [What is AVM](https://www.avmalliance.org/what-is-avm/) - What Is Brain AVM? Overview A Brain arteriovenous malformation (AVM) occurs when a tangle (like a ball of wires) of arteries (which are designed to carry high flowing blood coming from the heart) connects directly to veins (which are designed to carry low flowing blood slowly back to the heart) without any capillaries (the smallest - [Request Printable Resources](https://www.avmalliance.org/request-printable-resources/) - Request Printable Resources Printed Resources by MailMedical professionals can simply fill out our easy-to-use form to request printed resources, including brochures, fact sheets, and educational materials. We will promptly mail these materials to your clinic or office, allowing you to offer patients comprehensive information about AVM and its management. Name of Doctor or Professional Requesting - [Getting a Second Opinion](https://www.avmalliance.org/getting-a-second-opinion/) - Getting A Second Opinion Seeking a Second Opinion – Empowering Parents in AVM and Pediatric Stroke DiagnosesAs a parent facing an AVM or pediatric stroke diagnosis for your child, you may have questions and uncertainties. Seeking a second opinion can be a valuable step in ensuring the best possible care and understanding all available treatment - [Terms of Use](https://www.avmalliance.org/terms-of-use/) - These Terms govern your access to, usage of all content, Product and Services available at https://www.avmalliance.org website (the “Service”) operated by AVM Alliance (“us”, “we”, or “our”). Your access to our services is subject to your acceptance, without modification, of all of the terms and conditions contained herein and all other operating rules and policies - [Privacy Policy](https://www.avmalliance.org/privacy-policy/) - Welcome to https://www.avmalliance.org (the “Site”). We understand that privacy online is important to users of our Site, especially when conducting business. This statement governs our privacy policies with respect to those users of the Site (“Visitors”) who visit without transacting business and Visitors who register to transact business on the Site and make use of - [AVM Video Resources](https://www.avmalliance.org/avm-video-resources/) - AVM Video Resources - [For Clinicians & Doctors](https://www.avmalliance.org/for-clinicians-doctors/) - For Clinicians & Doctors Request Printable Resources Access essential information to help guide patients towards a caring community of support, enabling them to cope with the challenges of AVM diagnosis and treatment. Recruit Participants For Study or Trial Submit your study and we will assist in finding interested and eligible AVM warriors. Let us help - [For Parents](https://www.avmalliance.org/resources-for-parents/) - General Resources AVM Alliance Support Network Connect with our empathetic community through the AVM Alliance Support Network. Share your journey, seek guidance, and receive emotional support tailored to your unique needs. AVM Alliance Online Community Join our diverse Facebook group of AVM warriors and parents, where experiences are shared, questions are answered, and lasting friendships - [AVM Glossary of Terms](https://www.avmalliance.org/avm-glossary-of-terms/) - AVM Glossary of Terms TermDefinitionAnkle Foot Orthotic (AFO)A brace that supports the ankle and foot.ApneaAn unexplained episode of cessation of breathing for 20 seconds or longer.Aquatic TherapyTherapy provided in a warm pool to promote muscle relaxation and flexibility.Arterial Ischemic Stroke (AIS)Brain injury caused by blockage of blood flow in an artery.Arteriovenous Malformation (AVM)Abnormal tangles of - [AVM Research Articles Summaries](https://www.avmalliance.org/avm-research-article-summary-database/) - AVM Research Articles Summaries Title: A Treatment Paradigm for High-Grade Brain Arteriovenous MalformationsStudy Link: Read the Full StudySummary: This published study focuses on the treatment outcomes of large brain arteriovenous malformations (AVMs). The study investigates a novel approach of dividing a large brain AVM into different sections and then treating each section separately with radiation. - [Volunteer Parent Support Program](https://www.avmalliance.org/volunteer-parent-support-program/) - Volunteer Parent Support Program If you are a parent who understands the challenges of an AVM diagnosis and wishes to offer support, our Volunteer Parent Support Program is the perfect opportunity. Join our compassionate community of parents who are eager to lend a listening ear, share experiences, and provide valuable guidance to those facing a - [Strength / Courage Book Request](https://www.avmalliance.org/strength-courage-book-request/) - Strength / Courage Book Request At AVM Alliance, we believe in empowering AVM warriors with strength and courage throughout their journey. As part of our commitment to our AVM Warriors, we are sending out inspiring books to those in need. These handpicked titles serve as a source of motivation and empowerment, providing comfort and encouragement - [Grief Packages](https://www.avmalliance.org/grief-packages/) - AVM Alliance Grief Packages In times of loss, we understand the profound impact on families of AVM warriors who have gained their wings. Our Grief Packages are thoughtfully designed to offer compassion and comfort during these difficult moments. Filled with items of solace and support, these packages serve as a heartfelt gesture, reminding grieving families - [Hospital Gift Package Request](https://www.avmalliance.org/hospital-gift-package-request/) - Hospital Gift Package Request Brighten the spirits of AVM warriors during their hospital stay with our specially curated Hospital Gift Packages. Thoughtfully designed with comforting essentials and personalized messages, these packages bring moments of solace and support to those bravely facing AVM challenges. Request a gift package today and join us in spreading compassion and - [AVM Alliance Support Intake Form](https://www.avmalliance.org/avm-alliance-support-intake-form/) - Support Intake Form By submitting this secure online form, I agree that the information I provide for myself or my child may be used by the AVM Alliance and their Support Specialists solely for my participation in the AVM Alliance Support Network. I understand the Support Specialist is a volunteer for AVM Alliance, and their - [AVM Family Assistance](https://www.avmalliance.org/avm-family-assistance/) - [Shop](https://www.avmalliance.org/shop/) - [Sample Page](https://www.avmalliance.org/sample-page/) - This is an example page. It's different from a blog post because it will stay in one place and will show up in your site navigation (in most themes). Most people start with an About page that introduces them to potential site visitors. It might say something like this: Hi there! I'm a bike messenger ## Donation Forms - [Fuel The Mission Fund](https://www.avmalliance.org/donations/fuel-the-mission-fund/) - [] - [Donation Form](https://www.avmalliance.org/donations/fundraising-campaign/) - [] - [🎁 Holiday Stuffy Mail Out](https://www.avmalliance.org/donations/🎁-holiday-stuffy-mail-out/) - [] - [Friendship Builders: The Courage Crew](https://www.avmalliance.org/donations/friendship-builders-the-courage-crew/) - [] - [Messages of Hope: Notes of Encouragement](https://www.avmalliance.org/donations/messages-of-hope-notes-of-encouragement/) - [] - [Wings of Comfort: Parent Support Group](https://www.avmalliance.org/donations/wings-of-comfort-parent-support-group/) - [] - [Care Binders: The Family Lifeline Binder](https://www.avmalliance.org/donations/care-binders-the-family-lifeline-binder/) - [] - [Knowledge Saves Lives: Hospital Handouts](https://www.avmalliance.org/donations/knowledge-saves-lives-hospital-handouts/) - [] - [Courage Delivered: Warrior Strong Packages](https://www.avmalliance.org/donations/courage-delivered-warrior-strong-packages/) - [] ## Products - [2025 AVM Awareness Shirt (PRE ORDER)](https://www.avmalliance.org/product/2025-avm-awareness-shirt/) - Spread the word on pediatric stroke and AVM Awareness with our 2025 AVM Alliance Shirt! Show your support by wearing our 2025 "Worn for a Warrior" design featuring a QR code that will allow people to read warrior stories from across the globe! This is a great way to support AVM research and looking pretty snazzy while doing it. Shipping Reminder: This is a PRE ORDER, please allow a couple weeks as we take orders to assess and meet our minimum quantity limit. If you would rather come to College Station to pick up your order, you can enter code "LocalPickUp" to remove the shipping fee. Please note, by entering this code YOU CANNOT SHIP THE ITEM TO ANY ADDRESS. This is for in-person pick-up only in College Station, TX. - [Worn for a Warrior Window Decal](https://www.avmalliance.org/product/worn-for-a-warrior-car-decal/) - Worn for a Warrior Window StickerShow your support and spread awareness with our Worn for a Warrior window sticker. Measuring 4.25" x 4", this high-quality vinyl sticker is perfect for car windows, laptops, water bottles, or anywhere you want to display strength and solidarity. Designed to withstand the elements, it’s durable, fade-resistant, and easy to apply. Every sticker helps spark conversation and honors the brave warriors and families impacted by brain vessel disease and pediatric stroke. - [AVM / Aneurysm / Stroke Car Decal](https://www.avmalliance.org/product/avm-aneurysm-stroke-car-decal/) - Let "Artie V' help you spread awareness that "Stroke Has No Age Limit!" with our adorable car decal! - [CARE BINDER: Your Child’s Medical Life, in One Place](https://www.avmalliance.org/product/avm-care-binder/) - The Care Binder keeps your child’s medical history, meds, imaging, and notes all in one place—so in a crisis, you hand doctors answers, not chaos. - [AVM Awareness Pin](https://www.avmalliance.org/product/avm-awareness-pin/) - AVM Alliance's famous butterfly pig Artie V. Reminding viewers about Brain Vessel Disease. Printed in full color on one side and cut to any shape, our acrylic keychains come fully assembled with a clear snap closure and stainless steel key ring. Each custom pin features a soft PVC clutch to easily fasten to your clothing or accessories! 1.5" x 1.5" - [Worn for a Warrior Pin](https://www.avmalliance.org/product/worn-for-a-warrior-pin/) - Worn for a Warrior Awareness PinSpread strength, hope, and awareness with our Worn for a Warrior pin. Sized at 1.87″ × 1.75″, this full-color pin is the perfect way to show support for warriors and families impacted by brain vessel disease and pediatric stroke. Affordable and meaningful, it’s priced to share—making it easy to gift to doctors, nurses, therapists, friends, and family. Wear it on your jacket, bag, or lanyard to spark conversations and keep awareness shining wherever you go. - [AVM Alliance Bracelet](https://www.avmalliance.org/product/avm-alliance-bracelet/) - Get our AVM Alliance bracelet – Featuring our Butterfly Pig mascot "Artie V"! - [Care Coordination Packet](https://www.avmalliance.org/product/care-coordination-packet/) - Care Coordination PacketYour all-in-one set of printable forms and trackers designed to help parents organize, plan, and manage the complex care their child needs. Inside, you’ll find tools to: Track doctor visits and appointments Prepare for surgeries and emergencies Communicate clearly with doctors, schools, and caregivers Monitor medications, symptoms, and side effects Advocate confidently with customizable letters and action plans No more scattered notes or forgotten details — just everything you need to put your child’s care in one clear, manageable place. Simplify the chaos. Gain peace of mind. Take control of your child’s care. We welcome any donations to continue fulfilling the needs of our community. - [AVM Alliance Hat "Stroke Has No Age Limit"](https://www.avmalliance.org/product/avm-alliance-hat-stroke-has-no-age-limit/) - White Embroidered baseball style cap with AVM Alliance Logo and "Stroke Has No Age Limit" - [AVM / Aneurysm / Stroke Awareness Keychain](https://www.avmalliance.org/product/avm-aneurysm-stroke-awareness-keychain/) - The AVM Awareness butterfly pig Artie V reminding everyone about AVM / Aneurysm and pediatric Stroke Awareness - "Stroke has no age limit!" Printed in full color on one side and cut to any shape, our acrylic keychains come fully assembled with a clear snap closure and stainless steel key ring. Lightweight, durable, and easy to carry around, these are the perfect addition to your keys, favorite bag, or as a wonderful keepsake. 2" x 2" acrylic - ["Worn for a Warrior" Polar Fleece Blanket](https://www.avmalliance.org/product/worn-for-a-warrior-polar-fleece-blanket/) - 50x60 Polar Fleece Blanket – “Worn for a Warrior” Wrap yourself or a loved one in warmth and encouragement with our soft 50x60 polar fleece blanket featuring the Worn for a Warrior logo. Lightweight yet cozy, this blanket is a comforting companion for long hospital stays, recovery days at home, or as a meaningful gift for Survivor Day celebrations. Designed to inspire strength and hope, it’s more than just a blanket—it’s a reminder that no warrior fights alone. Whether keeping warm in a chilly hospital room or sharing a thoughtful gift with a survivor, this blanket brings comfort and support when it’s needed most. - [Worn for a Warrior Keychain](https://www.avmalliance.org/product/worn-for-a-warrior-keychain/) - Worn for a Warrior Acrylic KeychainCarry strength and awareness everywhere you go with our Worn for a Warrior acrylic keychain. Measuring 2.14″ × 2″, this full-color design is printed on high-quality acrylic that’s both lightweight and durable. Perfect for keys, bags, or backpacks, it’s a daily reminder of courage and solidarity with those impacted by brain vessel disease and pediatric stroke. Easy to carry and made to last, this keychain is as meaningful as it is practical. - [Always Ready Checklist Collection (SPANISH)](https://www.avmalliance.org/product/always-ready-checklist-collection-spanish/) - Colección de Listas de Verificación “Siempre Listos” Un conjunto cuidadosamente diseñado de listas de verificación creado para ayudar a los padres de niños con condiciones médicas complejas a sentirse preparados y organizados en cada paso de su camino de atención. Las listas incluidas cubren todo, desde: Visitas al médico y bolsas listas para emergencias Estancias hospitalarias planificadas y organización de estudios de imagen Preguntas para considerar durante las citas Estrategias de comunicación con la escuela Y hasta momentos especiales como celebraciones del día del sobreviviente Tome el control, reduzca el estrés y maneje con confianza la atención de su hijo con listas simples y claras, adaptadas a sus necesidades únicas. Porque la preparación significa tranquilidad. Aunque este producto se ofrece de manera gratuita, agradecemos cualquier donación para poder continuar brindando los recursos solicitados a nuestra comunidad. - [Care Coordination Packet (SPANISH)](https://www.avmalliance.org/product/care-coordination-packet-spanish/) - Paquete de Coordinación de Cuidados Su conjunto completo de formularios e instrumentos imprimibles, diseñados para ayudar a los padres a organizar, planificar y gestionar la atención médica compleja que su hijo necesita. En el interior encontrará herramientas para: Registrar visitas y citas médicas Prepararse para cirugías y emergencias Comunicarse claramente con médicos, escuelas y cuidadores Monitorear medicamentos, síntomas y efectos secundarios Defenderse con confianza mediante cartas y planes de acción personalizables No más notas sueltas ni detalles olvidados — solo todo lo que necesita para reunir la atención de su hijo en un solo lugar claro y manejable. Simplifique el caos. Gane tranquilidad. Tome el control del cuidado de su hijo. Agradecemos cualquier donación para poder seguir atendiendo las necesidades de nuestra comunidad. - [DONATE A BINDER](https://www.avmalliance.org/product/donate-a-binder/) - 💔 Imagine this moment…You’re standing in an ER at 2 AM.Your child can’t speak.The doctor is asking questions you can’t think fast enough to answer.The information is scattered — some at home, some in your phone, some in your memory. Now imagine…You hand over one binder.Every MRI, every medication, every specialist’s note, every allergy, every trigger — right there.The doctor gets to work.And you get to focus on your child, not on searching for paperwork. This is what our Care Binder does for parents of medically complex children.It turns panic into preparedness.Fear into focus. We want to be able to give these binders to newly diagnosed families for free — but we can’t do it alone. 💖 Your sponsorship puts this life-changing tool directly into a parent’s hands.For them, it’s not “just a binder.”It’s a lifeline. 👉 Sponsor a Care Binder today. Give a parent the peace of mind they deserve in the moments that matter most. - [Always Ready Checklist Collection](https://www.avmalliance.org/product/always-ready-checklist-collection/) - Always Ready Checklist Collection A thoughtfully designed set of checklists created to help parents of medically complex children feel prepared and organized for every step of their care journey. Included checklists cover everything from: Doctor visits and ER go-bags Planned hospital stays and imaging organization Questions to consider during appointments School communication strategies And even special moments like survivor day celebrations Take control, reduce stress, and confidently manage your child’s care with simple, clear checklists tailored to your unique needs. Because preparation means peace of mind. While this product is provided for free, we welcome any donation in order to continue providing requested resources to our community. - [AVM Alliance Piggy Plushies](https://www.avmalliance.org/product/avm-alliance-piggy-plushies/) - Get one of your very own Piggy Plushies! Our piggies will be wearing an AVM Alliance t-shirt with our motto "Stroke Has No Age Limit!" Piggy Plushy Measurements: 6"W x 6.5"H ## Warriors - [Camber S.](https://www.avmalliance.org/warrior/camber-s/) - [Jackson S.](https://www.avmalliance.org/warrior/jackson-s/) - [Olivia M.](https://www.avmalliance.org/warrior/olivia-m/) - [Nathanael A.](https://www.avmalliance.org/warrior/nathanael-a/) - [Martina B.](https://www.avmalliance.org/warrior/martina-b/) - [Addy G.](https://www.avmalliance.org/warrior/addy-g/) - [Griffin](https://www.avmalliance.org/warrior/griffin/) - [Phoebe W.](https://www.avmalliance.org/warrior/phoebe-w/) - [Mason H.](https://www.avmalliance.org/warrior/mason-h/) - [Cole M.](https://www.avmalliance.org/warrior/cole-m/) - [Madeline N.](https://www.avmalliance.org/warrior/madeline-n/) - [Makayla G.](https://www.avmalliance.org/warrior/makayla-g/) - [Brayden O.](https://www.avmalliance.org/warrior/brayden-o/) - [Katie G.](https://www.avmalliance.org/warrior/katie-g/) - [Lexi](https://www.avmalliance.org/warrior/lexi/) - [David D.](https://www.avmalliance.org/warrior/david-d/) - [Nicky M.](https://www.avmalliance.org/warrior/nicky-m/) - [Tanner B.](https://www.avmalliance.org/warrior/tanner-b/) - [Ava R.](https://www.avmalliance.org/warrior/ava-r/) - [Ian D.](https://www.avmalliance.org/warrior/ian-d/) - [Lily](https://www.avmalliance.org/warrior/lily/) - [Evie W.](https://www.avmalliance.org/warrior/evie-w/) - [Aubrey S.](https://www.avmalliance.org/warrior/aubrey-s/) - [Tanner P.](https://www.avmalliance.org/warrior/tanner-p/) - [Daniel M.](https://www.avmalliance.org/warrior/daniel-m/) - [Marina G.](https://www.avmalliance.org/warrior/marina-g/) - [Nicholas O.](https://www.avmalliance.org/warrior/nicholas-o/) - [Addison C.](https://www.avmalliance.org/warrior/addison-c/) - [Cody C.](https://www.avmalliance.org/warrior/cody-c/) - [Piper J.](https://www.avmalliance.org/warrior/piper-j/) - [Evalyn N.](https://www.avmalliance.org/warrior/evalyn-n/) - [Nina W.](https://www.avmalliance.org/warrior/nina-w/) - [Kyler L.](https://www.avmalliance.org/warrior/kyler-lewis/) - [Samuel G.](https://www.avmalliance.org/warrior/samuel-g/) - [Tyler B.](https://www.avmalliance.org/warrior/tyler-b/) - [Larkham](https://www.avmalliance.org/warrior/larkham/) - [Ely H.](https://www.avmalliance.org/warrior/ely-h/) - [Jaime P.](https://www.avmalliance.org/warrior/jaime-p/) - [Norrin C](https://www.avmalliance.org/warrior/norrin-c/) - [Evan C.](https://www.avmalliance.org/warrior/evan-c/) - [Ryan L.](https://www.avmalliance.org/warrior/ryan-l/) - [Zach H.](https://www.avmalliance.org/warrior/zach-h/) - [Wyatt P.](https://www.avmalliance.org/warrior/wyatt-p/) - [Amberley A.](https://www.avmalliance.org/warrior/amberley-a/) - [Alyssa L.](https://www.avmalliance.org/warrior/alyssa-l/) - [Ashley L.](https://www.avmalliance.org/warrior/ashley-l/) - [Morgan B.](https://www.avmalliance.org/warrior/morgan-b/) - [Hannah A.](https://www.avmalliance.org/warrior/hannah-a/) - [Bobby S.](https://www.avmalliance.org/warrior/bobby-s/) ## Categories - [Uncategorized](https://www.avmalliance.org/category/uncategorized/) - [AVM Information](https://www.avmalliance.org/category/avm-information/) - [Important Organizations & Businesses](https://www.avmalliance.org/category/important-organizations-businesses/) - [Related Conditions](https://www.avmalliance.org/category/related-conditions/) - [Raylene's Words](https://www.avmalliance.org/category/raylenes-words/) ## Tags - [Webinar](https://www.avmalliance.org/tag/webinar/) - [Mesha Martinez](https://www.avmalliance.org/tag/mesha-martinez/) - [monthly](https://www.avmalliance.org/tag/monthly/) ## Product categories - [Apparel](https://www.avmalliance.org/product-category/apparel/) - [Accessories](https://www.avmalliance.org/product-category/accessories/) - [Toys](https://www.avmalliance.org/product-category/toys/) - [Care & Support](https://www.avmalliance.org/product-category/care-support/) - [Donation](https://www.avmalliance.org/product-category/donation/) ## Product tags - [Binder](https://www.avmalliance.org/product-tag/binder/) - [care binder](https://www.avmalliance.org/product-tag/care-binder/) - [care kit](https://www.avmalliance.org/product-tag/care-kit/) - [kit](https://www.avmalliance.org/product-tag/kit/) - [care packet](https://www.avmalliance.org/product-tag/care-packet/) - [medical insert](https://www.avmalliance.org/product-tag/medical-insert/) - [guides](https://www.avmalliance.org/product-tag/guides/) - [checklist](https://www.avmalliance.org/product-tag/checklist/) - [set](https://www.avmalliance.org/product-tag/set/) - [organizer](https://www.avmalliance.org/product-tag/organizer/) - [donate](https://www.avmalliance.org/product-tag/donate/) - [donation](https://www.avmalliance.org/product-tag/donation/) - [packet](https://www.avmalliance.org/product-tag/packet/) - [organize](https://www.avmalliance.org/product-tag/organize/) - [medical journal](https://www.avmalliance.org/product-tag/medical-journal/) - [medical binder](https://www.avmalliance.org/product-tag/medical-binder/) - [doctor appointment keeper](https://www.avmalliance.org/product-tag/doctor-appointment-keeper/) - [document keeper](https://www.avmalliance.org/product-tag/document-keeper/)