Soapbox Talkers

Featured Talker

Andrew Santos

Andrew Santos is an AVM Survivor and currently volunteers with SCI Fit in Fresno, California.


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. 

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The Porlaris Family

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.

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Chris Guerrero

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.

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Leah Cipolla, OTR/L, CAPS

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 and on Instagram @solsticecaretherapy and @theageproofhome.

Morgan Bailey

Morgan Bailey

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 Zelinsky

Vincent Zelinsky

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.

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Jessica Asay

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.

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Rhian Jansen

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.

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Julia Magdei

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.



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Adrienne Adesanwo

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:

OneMindfullMama IG:



Anna and Izzie

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.

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Dana Alessia

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!

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Emily Navarre

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”

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Donna Dymally

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.

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Coda LeClaire

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.

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Madison Bevans

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.

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Dr. Gwenllian Evans

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.

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Beth Losk

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.

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Katie Morelli

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

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.

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Nancy Nauman

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.

Trish Speake

Trish suffered an AVM rupture in 2008. She was unaware that she had an AVM. She has been volunteering and offering support in various AVM/aneurysm support groups for over 11 years. She currently is an editor for TAAF Talk Magazine.

“Emancipate yourself from mental slavery. None but ourselves can free our minds.” – Bob Marley

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Tom Tyrrell

Tom Tyrrell a.k.a Ridlaa is an artist, rapper and beat maker based in Birmingham (UK) drawing inspiration from his struggles, managing an AVM in the brain over the last 12 years. He tells stories using creative writing and visuals. His tracks are extracts from his life, employing metaphors and self-deprecating satire to aid his artistic vision and expression. He produces, directs and edits his own music videos and short films, collaborating with other artists. His work boasts innovation, creativity and vivid storytelling.

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Daniel Walsh

Daniel Walsh qualified as a doctor from the Royal College of Surgeons in Ireland in 1993. His basic surgical training took place in Dublin and London and his Neurosurgical training was undertaken in Glasgow. He completed specialist Fellowship training in Neurovascular Surgery working with Professor Michael Morgan in Sydney, Australia, one of the world’s leaders in surgery for brain AVM. His practice encompasses cerebral aneurysms, arteriovenous malformations of the brain and spinal cord, cavernoma, cerebral revascularisation, Moyamoya disease, brain haemorrhage and general neurosurgery including tumours of the brain and spine. Neurovascular referrals are received from around the United Kingdom and internationally. Click here to read a complete biography on Dr. Walsh.

Vanessa Bio

Vanessa Garza

Vanessa is a Boston-based aspiring writer, mother of two children, former corporate America consultant, and survivor of four elective brain surgeries to remove the asymptomatic AVM in her right temporal lobe. Thanks to the determined medical team who treated her and the incredible support she received before, during, and after her trauma, she hopes to raise awareness for this very rare neurological disease.  She believes she survived this journey in part to pay it forward by honoring and supporting all AVM warriors, their caregivers, and their medical teams, in any way she can.


Nisha Ramsinghani

Nisha Ramsinghani is a psychiatrist who specializes in children, adolescents, and adults.  She lives in Orange County, California with her husband, daughter, and son.  Nisha endured a hemorrhagic stroke in 2016 while 31 weeks pregnant with her son which was later found to be an AVM.  She enjoys spontaneous high-tea parties, dancing in the family room with her husband and kids, watching basketball, listening to music, and working out. She believes her stroke was the most pivotal moment in her life that has helped shape her be the person she is today.


Ninibeth Ramirez Delfaus

Ninibeth lives in Puerto Rico with her mother and two dogs Morocho and Popcorn. Known for her friendly, giving spirit, Ninibeth is a favorite helper within the AVM community.

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James Larken Smith

James Larken Smith is an AVM-Stroke-Aneurysm survivor that lives in Sugar Land, Texas. He is a lifelong musician, freelance baseball writer, and former radio host of ‘The Morning Coffee Mix’. Previous to his AVM he was a Senior Research Technician specializing in paint and coatings research and testing at ExxonMobil Chemical, where he received numerous awards for his work on environmental coatings and safety culture leadership. He is married to his wife Lisa, with two children and two step-daughter’s, and one beautiful granddaughter Andi.

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Shawn Goodman

Shawn is a 26 year old early childhood development specialist and counselor, who’s passion for music has transformed his life. He lives with his Aunt, in Duncanville, Texas, working his way through extended recovery from a double aneurysm he experienced in 2019. He finds solace in listening, singing, and making his own music. His music will transport you through various generational styles of Soul and R&B. You can find his work by going to:


Stacey Gil

Stacey is now a stay at home 42 year old mom of two young boys,  Michael, 14, and Andrew, 11. She lives with her boys and boyfriend of seven years in Monroe Township, New Jersey. She enjoys the outdoors and spending time with her family and friends.


Taylor Gilkey Laird

Taylor is a daughter, a sister, an aunt, a wife and a friend.  She is an AVM survivor.  She is a lover of life and believes we all were thrown into this wild world to make a difference, whether it be big or small.  She believes adversity creates character and we are all tougher than we realize.  She  is a work in progress and in the last two years has been amazed at how the body can heal.  Her happy place is the Central Coast with her husband and two pups.  She is proud of how far she has come and is excited to see how she will continue to go.  She is  a handbag designer by trade and is excited to get back in the saddle doing what she truly loves.

Click the photo above to learn more about Dr. Langer and the heroes of Netflix’s Lenox Hill.

To see the trailer for the Netflix Series, Lenox Hill, click here


Dawn Mureddu

Dawn Mureddu is 59 years old and lives in Johnston, RI with her husband, Chuck.  They have one son and 4 wonderful grandchildren.  Dawn has always worked in the banking and mortgage banking industry in various capacities. She loves family time, working out to stay fit both physically and mentally, and enjoys being outside.  Her goal is to be remembered as a caring person, always staying positive and with a smile.


Elaine Schaller

Elaine Schaller lost her 33-year-old daughter Cindy Sherwin to a ruptured brain aneurysm in 2007. The shock of her death left Schaller certain she would never again experience a happy moment. Writing daily letters to her daughter would provide an opportunity to give voice to her grief and ultimately became the basis for her book: Dear Cindy, Love Mom: Letters of Love, Loss and Grief. All proceeds of the book go toward the Brain Aneurysm Foundation which raises money and awareness for research grants for the early detection and prevention of the disease.

Jay Dolia, MD.

Dr. Dolia is a Clinical Instructor of Neurology in the Department of Neurology at the University of Pittsburgh and a Neuroendovascular Surgery Fellow.  In addition, Dr. Dolia shares a passion for nonprofit work, is the member of several groups and associations, and leads both Young NIR as well as SVIN’s Covid-19 outreach program, NeuroHeroes.


Angela Ramirez Holmes

Angela Ramirez Holmes started her advocacy in rare diseases in 2013 when her then 8 year old son Andrew was diagnosed with a rare brain condition, an arteriovenous malformation or AVM. Angela is the Founder and President of Cal Rare, a non-profit coalition of rare disease stakeholders dedicated to improving the lives of rare disease patients in California.  She lives with her son and husband in the Eastern San Francisco Bay Area.

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Nicole Perra

Nicole Perra is currently staying with her fiancé and two cats in Rochester New Hampshire. She went to school for Speech Therapy and work as a Speech Therapist in a school. She loves running and has ran many half marathons and will hopefully run her first marathon in 2021. Also, she is getting married in April of 2021!

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George Valdez

George is a 27 year old construction inspector from Long Beach, California. He enjoys spending time with his girlfriend, going to the beach with friends. and attending concerts. He found out he had both an AVM and aneurysm in his brain after suffering an AVM hemorrhage in September of 2019.

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Michele Cozadd

Michele is a married, crazy cat lady, who survived a ruptured brain aneurysm. I  left my career in Supply Chain IT to focus on using my voice to advocate for aneurysm awareness and education. She believes that she was saved for something greater than herself. She loves being creative! She is using that creativity to write a blog to document her own recovery for other survivors.

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Lisa Hannegan

MS, NP, Co-President of TAAF and TAAF Talk Science Consultant

Lisa was both a Supervisor and Clinical Nurse Specialist within the Dept. of Neurological Surgery at University of California San Francisco as well as an Assistant Clinical Professor at UCSF School of Nursing until her retirement in June 2017. In her nearly 40-year nursing career at UCSF, she worked directly with over 5,000 patients with aneurysms or vascular malformations and brings her considerable expertise to TAAF. For more information about Lisa, Click here for the Masthead

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Leslye Wilson

As a self-proclaimed silent introvert, Leslye Wilson found her voice through poetry. After surviving a cerebral arteriovenous malformation (AVM) in September of 2008, Leslye continues to use poetry as her voice with the hope of educating people on AVMs and disabilities, along with uplifting and empowering survivors. Her works have been featured in several blogs, newsletters and anthologies, including “The View from Here: Poetry to Help You Soar!” and “In Transit: Poetry of People on the Move” under her pen name, Lita Verella. In addition to writing, Leslye enjoys drawing, traveling, hiking, mild rock climbing, yoga and meditation.

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Deb Toy Benzel

On the last day of a family vacation in the Adirondack Mountains 10 years ago, Deb survived an AVM rupture that turned her into the Wonder Woman she is today, not perfect nor Mother Teresa, but wonderful all the same.


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Beautiful Nameone

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Dina Chon

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Laura Sprouse Winans

Laura Sprouse Winans was the sole caregiver for her mom, Hattie.  Hattie suffered a ruptured brain aneurysm in 2015 and passed away this year. Her mom was always what kept her happy. She didn’t look at it as work when taking care of her; Laura looked at it as making memories while enjoying life.

A special thank you from the bottom of my heart goes out to Mrs. Dina Chon for always being there for me when I needed to vent, for allowing me to talk to you on the phone, and for always checking on mom and I. Thank you for all your help.
Charles K. for bio

Charles K

Charles K is a 3rd generation San Francisco native and resides in the Bay Area.  He spends his free time with his beloved Shiba Inu.

Dina Chon

TAAF Community Engagement Manager

Part of the TAAF Talk Team; to learn more about Dina, Click here for the Masthead.