Community Advocates

In order to stay up to date on the best recipes, latest treatments, drug discovery, clinical studies and how to manage axial spondyloarthritis everyday, brings you frequent articles, blogs, points of view and advice from leading patient advocates and professional medical experts.

Current advocates

René Agterhof

René Agterhof has been an Ankylosing Spondylitis patient for almost thirty years. At age nine he had the first symptom. Not long after that, he started to experience heavy inflammation pains in his lower back and hip region. Read more.

James Allen

James Allen is a health tech entrepreneur who has had ankylosing spondylitis since he was 17. After a severe flare-up in 2013, he decided to leave his job in IT consultancy to find a vocation that was more adaptable to his unpredictable and always changing chronic pain and fatigue. Read more.

Arden Doerner Barbour

Arden Doerner Barbour was diagnosed with non-radiographic axial spondylarthritis in May 2020. She went from being an active Coloradan enjoying everything Colorado has to offer outdoors to barely being able to walk around the block within a one-week period. Read more.

Lisa Maria Basile

Lisa Marie Basile was officially diagnosed with Ankylosing Spondyltiis in 2017 after living with nearly a decade's worth of symptoms. She has attended the NASS meetups in NYC, and is an advocate for many people with AS through her writing and social media presence. Read more.

Lana Buettner

Lana was diagnosed with Ankylosing Spondylitis in 2015 at the age of 23, shortly after her 4 years as a college student-athlete. After many difficult years of pain, doctor visits, testing, and treatments, she is now living a happy and healthy life. Read more.

Rebecca Cappello

Having worked in the medical field as a transcriber and assisting others with biologics inquiries, I was confident in navigating the difficult health care system to begin to heal and manage my own body. Today, I am still learning what my body needs! I hope I can offer a ray of hope and inspiration to those who tune in as I share about my life with nr-AxSpA. Read more.

Diana Castaldini

Diana Castaldini is a writer and passionate patient advocate living with ankylosing spondylitis and several other medical conditions. No stranger to chronic health issues, she was diagnosed with AS at the age of 26 on the heels of a long hospital stay and several surgeries for two serious brain conditions. Read more.

Ali Cornish

Ali Cornish is a freelance writer and founder of Everthrive who lives in northern Colorado with her husband and two young sons. She was diagnosed with AS in 2016, but has been living with its symptoms since 2011. Read more.

Steff Di Pardo

Steff is a 23-year-old living in Toronto, Ontario. In February of 2017, she started showing symptoms of AS in her lower back and hips, shooting down her right leg. She began going to numerous doctor’s appointments and physiotherapy twice a week. No one could determine what was going on, and eventually, she had to leave work due to the amount of pain she was in. Read more.

Jed Finley

Jed Finley was diagnosed with Ankylosing Spondylitis at the age of 12 during a time when children of that age were not prescribed medications and the amazing treatments we have today hadn't been invented yet. Because of this, he mostly forgot about his diagnosis and remained active until his early 20s when the disease became too much and he needed to stop the sports and activities he loved. Read more.

Nicky Filkas

Hello! My name is Nicky, I am 34 years old married with 3 beautiful children. I am from the city of Montreal born and raised. Read more.

Jessica Gama

Jessica is a writer, artist, wife, academic, dog-mom, and outdoor enthusiast who is learning more each and every day about life with a chronic illness. After nearly a decade spent in graduate school studying writing and literature, she is now a university administrator who spends her free time hiking and writing about her illness. Read more.

Dawn Gibson

Dawn Gibson has lived with Ankylosing Spondylitis since 2001. She entered health advocacy by joining Twitter in 2011. In the intervening years she immersed herself in Spoonie Twitter, founding Spoonie Chat in 2013 and growing it into a thriving community of mutual support, friendship, and solidarity for patients. Read more.

Charis Hill

Charis is an award-winning queer disabled chronic disease advocate, writer, speaker and model living with Ankylosing Spondylitis (AS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Read more.

Jes Hojsan

Jes is a mom of 2, married to her high school sweetheart, and calls CFB Petawawa Ontario home. She is a grief and chronic illness advocate as well as the creator of the #injectwithme campaign. (She can be found at @house_of_spoons on Instagram ) Read more.

James Hollens

James Hollens is a 26-year-old from Croydon, South London. Shortly after graduating from university in 2016, James was diagnosed with Rheumatoid Arthritis and three years later was lucky enough to add an Ankylosing Spondylitis diagnosis into the mix. Read more.

Sarah Islam

Sarah is a 26-year-old fourth year medical student at Indiana University School of Medicine. Originally from India, she currently lives in Indianapolis with her partner and 2 cats. She is the social media coordinator and marketing co-director for the Medical Student Pride Alliance (MSPA), a national student organization aiming to support and advocate for LGBTQ+ medical students. Read more.

Sarah Lee

When I was nine I began experiencing excruciating pain in all of my joints. My mom suspected it was Ankylosing Spondylitis as it ran in our family, but my family doctor refused to send me for blood work insisting that it was nothing more than growing pains. Read more.

Ali Long

Ali is a 23 year old student studying Social Care Work. She lives by the sea in the south of Ireland. She received her diagnosis in June of 2020. This is when things changed for Ali. “I was finally heard. Finally, someone believed me.” She was incredibly lucky to get her diagnosis within a year as this is not always the case. Read more.

Ashley Nemeth

Ashley Nemeth is a blind mother of 3 ages 14, 15, & 18, she was diagnosed with Ankylosing Spondylitis when she lost her vision suddenly at the age of 24. Ashley works in the disability field and outside of work is a vocal, passionate advocate. Read more.

Dyana Ortega

Dyana Ortega lives in northern Virginia with her husband and their cats. She works in the emergency department who recently accepted an overnight lead technician position and has been a licensed veterinary technician (LVT) since 2014; she’s been in veterinary medicine for nearly twenty years. Read more.

Cassia Pelton

Cassia Pelton was 18 years old when she first started experiencing sharp pains in her sacroiliac joints. She went from being a healthy varsity figure skater and university student, to being unable to walk or even sit up in bed. After visiting sports doctors, chiropractors, physiotherapists, and the ER, she was diagnosed with Ankylosing Spondylitis at the age of 19. Read more.

Devon Price

Dr. Devon Price is a social psychologist, writer, activist, and professor at Loyola University of Chicago’s School of Continuing and Professional Studies. Read more.

Anne-Marie Raymond

Anne-Marie Raymond experienced the onset of AS in her late twenties and was diagnosed at the age of 40. Since then she has been on a quest to live well in spite of her diagnosis. Read more.

Anna Samson

Anna Samson is a 22-year-old from Canada, living just outside of Toronto. They are currently studying at McMaster University where they are majoring in English. Read more.

Jamie Shinkewski

Jamie is a 26-year-old living with Non-Radiographic Axial Spondyloarthritis in the interior of British Columbia. He was diagnosed in January 2020 after encouragement to seek testing from his mom and aunt who have both been diagnosed with Ankylosing Spondylitis, making it a family affair. Read more.

Pamela White

Pamela is a former Division I athlete and current J.D. Candidate who was diagnosed with non-radiographic axial spondyloarthritis in 2018. She also lives with chronic pain and spinal injuries from her previous athletic career. Read more.

Julie Vallortigara

I am a Life Coach, an Artist and a Scientist. I am French, originally from Bordeaux. I moved to the UK in 2008. I have always been interested in many things; I am now living a rich life through my studies, my creative explorations, and my social life. Read more.

Former Advocates

Cheryl Crow

Cheryl Crow is a rheumatoid arthritis patient, occupational therapist, advocate and general life enthusiast. She is passionate about helping people with health challenges live their lives to the fullest extent possible. She loves helping people continue to do the things they want and need to do through life hacks, workarounds, mental health coping skills and more! Read more.

Sal Marx

Marx is an artist who works to illuminate invisible disease experiences and disrupt the medical industrial complex. Sal was born in Seattle, WA, and grew up playing sports year round. Read more.

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