Soapbox Talkers

The writers of TAAF Talk are made up of our contributors,The Aneurysm and AVM Foundation (TAAF) community, and friends. We are always interested in hearing the stories of those impacted by aneurysms and AVM. New articles are posted monthly. If you are interested in contributing to TAAF Talk, please contact us on our Chat Back Page.

Click the photos to read our talkers stories. 

Robert’s Bio: Robert , a music composer, is a very family oriented guy who works for a financial tech company. When he is not working he decompresses by cleaning and gardening on weekends.  When he has time he enjoys riding his Super 73 electric bike.

Rachel’s Bio: Before she was struck by a ruptured brain aneurysm, Rachel enjoyed working as a health care professional. She currently enjoys staying busy with many activities including:  cooking and baking, DIY arts and crafts, event planning, and writing poetry. She takes pleasure in spending time with her  furry animal family members (2 cats and 2 dogs) and human family members. Rachel passionately spreads Brain Aneurysm Awareness on her Instagram page @Pieceofmind_134.

Lauryn’s Bio: Lauryn, a senior in high school, is a social media vlogger.  She is currently the high school’s sports photographer and is an ASL interpreter. In her free time she enjoys hanging out with friends, singing karaoke, playing the ukulele, and writing music. Lauryn’s after high school graduation plans include attending  Manoa University in Hawaii to major in Athletics and Film.

Chris is a survivor of a liver transplant and a hemorrhagic stroke. He is  a passionate LA Angels fan. He holds his family as being the most important aspect of his life, especially his three kids.  Chris’ fight and focus on recovery is enviable and admirable.

Leah Cipolla, OTR/L, CAPS has been an Occupational Therapist (OT) for almost 10 years and recently became a Certified Aging in Place Specialist.  She has worked in the hospital, at an inpatient rehabilitation center, and in her client’s homes.  She has seen countless patients over the years due to injuries associated with falls including hip fractures, brain injuries, shoulder fractures, and more and it created in her a passion for preventing the falls from happening in the first place. She started her own private practice providing in-home occupational therapy services focused on home safety, aging in place, and fall prevention.  She also offers virtual home safety assessments and aging in place consultations to anyone around the globe and has created digital products to support those with the dream of aging at home.  You can find her at www.solsticecaretherapy.com and on Instagram @solsticecaretherapy and @theageproofhome.

Morgan  Bailey is a survivor of three brain aneurysms from her AVM (Arteriovenous Malformation). Morgan had a stroke, due to her AVM, in May of 2021. After a craniotomy, Gamma Knife, and a lot of PT, OT, and Speech Therapy she feels there is no tomorrow, only today, and that is what we have to live for. She joined TAAF Online magazine in 2020 as a Managing Editor and has recently moved into the Engagement Management position. Morgan is keen to provide help and support her aneurysm/AVM community.

Vincent was born in 1997, a software developer by trade, he grew up in Connecticut but now resides in South Carolina with his parents and dog, Sailor. Shy and reserved in youth, he has since found his voice and confidence in adulthood. He attended the University at Albany – SUNY where he graduated in 2019 with a Bachelor’s of Science in Computer Science. He suffered a right hemispheric AVM/aneurysm rupture in October of 2020. His hobbies include beachcombing, drawing, painting, exercising, and playing video games with his friends online. He has recently found power in community involvement and is an active member in many support groups. He is led by his innate curiosity and empathy for others.

Jessica Asay is a biomedical research engineer and a mom of 2 living in the San Francisco Bay Area. She is living with a large inoperable frontoparietal AVM and has been involved with TAAF and raising awareness about AVMs since 2020. In her free time, she loves biking, dancing, and decorating cakes.

Rhian is an artist and entrepreneur residing in Ontario, Canada. She is an AVM survivor who has taken a holistic approach to her recovery, focusing on balancing the  mind, body, and spirit. She finds solace while being submerged in nature, exploring forest trails and waterways with her four legged companion.

Julia Magdei is one of the newest members of the TAAF Youth Ambassador program.  As an Ambassador, you can count on seeing much more from Julia in the future.

You can find Julia’s story at Julia’s Journey to Healing on Youtube and Facebook.

 Facebook: https://www.facebook.com/juliasjourneytohealing

Youtube:https://www.youtube.com/@juliasjourneytohealing9954

Adrienne Adesanwo resides in Oklahoma City, OK, but will always have Southern California in her heart. Adrienne is the mom of twin 11 year old boys and an 8 year old girl as well as a wife of 14 years. She has a passion for awareness and advocacy as well as community and grief normalization which is where her social media presence was born from. Adrienne is now the primary full time caregiver for her son after his AVM rupture in September 2021 and uses her experiences to shed light and love on the medical mom life.

Social Media Links 

Nathanaels AVM journey: https://instagram.com/nathanaelsavmjourney

OneMindfullMama IG: https://instagram.com/onemindfullmama

Facebook: https://Facebook.com/onemindfullmama

Anna is the mum to Izzie, an AVM warrior.  Izzie is a primary grades student who thinks it’s a good idea to tell kids and others about rare diseases, such as AVM; Anna agrees.

Dana is a 24-year-old trying to get her life back after a catastrophic brain injury. She found a new purpose in being a source of hope to people facing impossible circumstances because She’s been there too. She enjoys spending time working on herself towards her recovery. Seeing her progress motivates her to never give up!

Emily L. Navarre is a “genetically weird” Gen-X writer and Brain Health Advocate/Translator who currently lurks in Olympia, WA. Her goal with her writing is to “interpret” what life feels like for a brain injury survivor by any memorable means necessary, as a means of both service and, well…penance and gratitude.

“To ER Docs everywhere, especially Dr. Eisner and Tython”

Stroke Triumphant and Celebrity Photographer, Donna Dymally believes photography has offered her the opportunity to cross paths with so many brilliant, creative and entertaining people on the planet while healing during a stroke experience. The picture above is of her on the red carpet with her published book: “Awoke by a Stroke”: My Roadmap to Restoration.

Coda is a caregiver to his partner, Stacey. He also works as a commercial HVAC service technician throughout the state of New Jersey. He enjoys being outdoors in general but spends a lot of time kayaking, hiking and exploring new places. On the weekends he is usually outside grilling something, or getting lost in the woods somewhere.

Madison Bevans is an AVM survivor who uses her social media platforms to bring awareness about her journey as a survivor. Her goal is to help and inspire others.

Dr. Gwenllian Evans is an avid baker, tea drinker, and survivor of a ruptured AVM. She also happens to be an aspiring neurosurgeon and currently works as a Neurosurgery Education Fellow in the UK. In her spare time she bakes anatomically accurate cakes, is a trustee for Brainbook, a charity created by neurosurgeons dedicated to promoting awareness of neurosurgical conditions in a patient friendly way on social media.

Beth is a retired long time special educator.  She lives with her beloved husband, Rick, and two cats outside Boston.  Beth experienced a ruptured brain aneurysm on Marathon Monday 2016 and has found the journey of recovery to be the most profound of her life. Every day brings some new awareness or insight, and she is proud to be a survivor and to support others on their paths. Beth loves landscape photography, reading, writing, scrapbooking and being on the beach.

Katherine Morelli was born and raised in Charlotte, NC. She is a 32-year-old former pastry chef. She recently married the love of her life and they  have a border collie named Belle. She is an AVM survivor.

Erin Havel is the author of The Malformation of Health Care: Illness, Insurance, and a Young American’s Struggle for Survival. Her fierce passion for advocacy stems from the struggles she witnesses in the communities surrounding her. With a mission for creating positive effective change in the world, Erin is a regular contributor/speaker at events promoting equality. Her writing projects are meant to encourage empathy and understanding in an increasingly harsh world. Erin lives in Palm Springs, CA with her spouse and young son.

Nancy is a mom to William, her AVM Angel, who passed away in 2017 from a rupture during surgery. His life and death has brought her to TAAF which has given her purpose to her grief and built a legacy for her son. She spends her extra time volunteering for TAAF as the Managing Editor for TAAF Talk Magazine. The rest of her time is busy teaching high school AVID in California and spending time with her toddler, Logan and husband, Josh.