The Cody Unser First Step Foundation
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Dedicated to raising awareness of Transverse Myelitis and advocating for people with disabilities.
08/20/2026
THIS IS PROGRESS. BUT WE MUST KEEP PUSHING. ♿️💜🏁🤘
This is a BIG win for us disabled patients. New federal accessibility requirements for medical diagnostic equipment mean more accessible exam tables, scales, mammography equipment and other diagnostic equipment.
After years of giving “Wheelchair Barbie Goes to the Gynecologist” lectures about inaccessible reproductive healthcare and recently experiencing inaccessible mammography equipment myself, seeing the physical barriers finally being addressed means A LOT.
We should celebrate this. But we also need to talk about where it falls short.
Requiring one accessible exam table may meet a minimum standard, but minimum access isn't necessarily equitable access.
I've lived this. At OB/GYN offices, I've had to request “the procedure room” because that's where the accessible exam table is. If that room is occupied, I have to wait longer times for an appointment. Disabled patients shouldn't experience longer waits or delays in care simply because there's only one room we can use.
And equipment solves only part of the problem.
We MUST get disability competency into medical education. An accessible table means little if the healthcare professional standing beside it hasn't been taught how to care for the disabled patient on it.
So YES, let’s celebrate this win. 🎉
But we MUST keep pushing.
More accessible equipment.�Equitable access.�Disability Competency Healthcare Professionals.
Accessibility is the floor. Equity is the goal. Rock ON! 💜🤘🏁
💜ATTENTION My SCI Peeps💜
What if your lived experience could help shape the future of spinal cord injury research?
For decades, people with spinal cord injuries have been studied.
Now it's time for US to help shape what gets studied.
The Patient-Focused Drug Development (PFDD) meeting is an opportunity for people living with SCI, caregivers, clinicians, researchers, and advocates to come together and ensure that the questions being asked, the treatments being developed, and the priorities being funded reflect what actually matters to our community.
This is about being an expert in your own life and informing the researchers what matters to YOU!!!
💜 What keeps you awake at night…pain, bowel and bladder issues?
💜 What has the biggest impact on your independence?
💜 What treatment breakthroughs do you hope to see?
💜 What do researchers still not understand about living with SCI?
Your experiences matter.
During this virtual meeting you'll hear from people living with SCI, participate in live polling, listen to community stories, and help contribute to the Voice of the Patient Report: a public report that helps inform researchers, clinicians, industry, and future FDA discussions about spinal cord injury treatments.
🗓 September 29
🕙 10:00 AM – 3:00 PM ET
💻 Virtual & FREE
Whether you're living with SCI, a family member, caregiver, clinician, researcher, or advocate, your perspective has value.
As I always say…
🏁 Researchers build the car.
🏁 Scientists develop the technology.
🏁 Regulators evaluate the evidence.
🏁 But we're the ones driving this race every day.
Let's make sure our voices help drive the future of SCI research. I'd love to see hundreds, if not thousands of people from the SCI community show up for the FREE virtual event! Imagine the message that would send. Let's fill the virtual room with the people who know SCI best: those of us living it.
Register today: SCIPFDD.org
08/01/2026
As Disability Pride Month comes to a close, I can’t believe everything this month held! ♿️💜♿️
It began with this photoshoot…thanks again Sis Shannon Lee Unser for the encouragement and the man behind the camera, Alan Osterholtz for the opportunity to get wet!
This was a celebration of finally embracing the body I once fought so hard against and to explain to the world. A body I used to criticize. A body society often tells us isn’t beautiful enough.
Then came one of the biggest challenges I’ve taken on in a long time: traveling solo to Washington, D.C. and Baltimore. I was nervous. I was scared. But I did it. I am so proud of myself!
I advocated beside disability leaders from across the country. I learned, laughed, danced, made new friends, and proved to myself that I am capable of more than fear would have me believe.
To every woman living with a disability...do yourself a favor.
Do a photoshoot. Somehow. Some way.
Not because you need validation from anyone else, but because you deserve to see yourself through a different lens. One that captures your resilience, your confidence, your beauty, and your story.
Your body is not something to hide. It is the body that has carried you through every challenge you’ve faced.
I used to reject mine.
Today, I’m proud of her. She’s been through fire!
Happy Disability Pride Month. Keep taking up space, keep pushing boundaries, and never let anyone convince you that your body is anything less than extraordinary. Full Stop!
Stay Sexy!
Live to the fullest!
Rock ON 🤘♿💜🏁🔥🧜♀️💋
Part 2: Baltimore. Johns Hopkins. Myelitis & Myelopathy Day 2026.
What an incredible way to end this unforgettable trip.
It was so good to be back with my myelitis family…patients, researchers, physicians, clinicians, and advocates all working together to improve the lives of those of us living with neuroimmunological disorders like MS, MOGAD, NMOSD, and the condition that changed my life at 12 years old in 1999 Transverse Myelitis (TM).
TM is a rare autoimmune neurological disorder where inflammation damages the spinal cord, disrupting communication between the brain and body. It can cause paralysis, changes in sensation, pain, bowel and bladder dysfunction, and many other secondary conditions that impact quality of life.
It was wonderful seeing my incredible physiatrist, Dr. Cristina Sadowsky, from the International Center for Spinal Cord Injury Kennedy Krieger Institute. She has been such an important part of my journey. If you or someone you love is living with paralysis, I can't recommend this program enough:
https://www.kennedykrieger.org/patient-care/centers-and-programs/international-center-for-spinal-cord-injury
It was also great catching up with Pines Cabahug, who I've worked with through the American Spinal Injury Association (ASIA):https://asia-spinalinjury.org
It was also amazing to see Dr. Stephanie Van, one of my pain physicians and an absolute badass when it comes to helping people live better with chronic pain…one of my biggest enemies!
A huge thank you to:
Dr. Carlos Pardo, the Director of the Myelitis and Myelopathy Center at Johns Hopkins: https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/myelitis-myelopathy
Dr. Cristina Sadowsky, and Dr. GG deFiebre, Executive Director of the Siegel Rare Neuroimmune Association for hosting such an outstanding event. It was great seeing you ALL! If you or someone you know is affected by a rare neuroimmune disorder, SRNA is an incredible resource.
The day was packed with updates on myelitis and myelopathy research, spinal cord injury, pain management, bowel, bladder and sexual health, mental health, neuromuscular retraining, stem cell therapies, and where science is taking us next.
This trip challenged me in every way imaginable…traveling solo, pushing through chronic pain, long days, and stepping outside my comfort zone. But it rewarded me even more.
My new motto: Do It SCARED. But Just Do IT.
Thank you to every single person who followed along, checked in on me, and sent messages of encouragement. I truly read them all, and your support became my fuel. You helped me push a little farther every single day.
Science matters.
Community matters.
The race isn't over.
Rock n' Roll 💜🤘🏁♿️
Today marks the 36th Anniversary of the Americans with Disabilities Act ♿️🤘♿️
I want to honor one of my greatest heroes and previous mentors, Judy Heumann the Mother of the Disability Rights Movement. She was a badass! Fierce. Relentless. Unafraid to demand what disabled people had always deserved: equal rights.
Judy once said, “Disability only becomes a tragedy when society fails to provide the things we need to lead our lives.” She didn’t just change disability history, she changed America.
I’m so excited that “Being Heumann” premieres on Apple TV on November 13! I can’t wait for this!!! I hope everyone watches it, because celebrating Judy’s story is celebrating all of us and every disability activist who fought to get us where we are today.
But our work isn’t over!!! Our rights are still under attack, and progress is never guaranteed! The ADA wasn’t the finish line, it was the starting line! How about some real enforcement of it?!?!
We owe it to Judy and those who came before us to keep fighting, keep showing up, and never stop demanding full inclusion.
Thank you, Judy from the bottom of my heart. We carry your legacy forward. Happy 36th Anniversary, ADA. Rock ON 💜♿🏁🤘🔥
Part 1…Buckle Up Everyone 💜🤘♿️🔥🏁
The National Council on Independent Living Conference was intense, overwhelming, soul-building... and exactly where I needed to be!!!
I spent the week with some of the boldest disability leaders in this country who refuse to accept a world where disabled people are hidden away in institutions instead of living full, messy, beautiful lives in our communities like everyone else.
We will NOT go back!
I met THE Theo Braddy! He has been a dynamite advocate for our community for over 40 years! He is the Executive Director of NCIL and wrote the book From Shack to White House, total badass and hero of mine!
One of the most powerful workshops focused on emergency management and disability preparedness. I also sit on the board of the nonprofit “MyHealthID Global” which focuses on emergency preparedness and disaster response, so this lit a fire in me. In New Mexico, we deal with fires and floods so this was an important workshop to learn from. Disabled people deserve to survive disasters, emergencies, and crises, not be forgotten because no one planned for us.
Accessibility isn’t charity. It’s infrastructure.
I learned. I connected. I plotted change. And yes... I danced my wheelchair ass off with amazing people! Ladies, we rocked it! 💜🤘💜
Shoutout again to Hyatt for proving inclusion is in the details. That lowered bar counter? Chef’s kiss. Nothing says “welcome” like designing a space where I don’t have to ask for permission to belong.
Then it was full throttle onto Amtrak and off to Baltimore for Myelitis Day at Johns Hopkins... but that’s Part 2…Stay Tuned!
To everyone who commented, cheered me on, and believed in me throughout this trip…THANK YOU. I read every single message. You became part of my pit crew. I wore your encouragement like armor! HUGS to you all! 💜
I missed my mom. I know she’d be telling me to quit overthinking and just hit the gas haha!
Rock ‘n’ Roll.
Happy Disability Pride Month.
Here’s your reminder:
Don’t shrink.
Don’t apologize.
Don’t wait for permission.
Expand. Take up space. Make some damn noise!
Haha…didn’t know there was an Albuquerque, NE
Happy PADI Women’s Dive Day 💜🧜♀️🌊🤿🪼
*More from my wet photoshoot with Alan Osterholtz
Every July, I celebrate 2 things: Disability Pride Month and PADI Women’s Dive Day. This collection of photos is dedicated to all my sea sisters around the world who have ever taken a giant stride into the unknown and found a piece of herself beneath the surface.
To the divers exploring vibrant reefs...
To the scientists advancing marine research...
To the conservationists protecting our blue planet...
To the underwater photographers capturing wonder...
To the instructors inspiring the next generation...
To every mermaid, every jellyfish, every ocean soul who simply feels at home in the sea...
Thank you for reminding the world that courage and curiosity can coexist.
As a PADI AmbassaDiver and a proud member of the Women Divers Hall of Fame, I’ve witnessed firsthand how the ocean transforms us. It doesn’t care what your body looks like, where you come from, or what challenges you face. Underwater, we are all humbled by something greater than ourselves.
The ocean has been my freedom, my teacher, my sanctuary, and my reminder that life is meant to be explored.
So keep diving.
Keep protecting our oceans.
Keep asking questions.
Keep chasing adventure.
Keep inspiring one another.
Water is life. And together, let’s continue…
“Changing the World, One Dive at a Time”
Happy PADI Women’s Dive Day
💜🧜♀️🪼🌊🐙🤿♿️
www.padi.com
www.wdhof.org
If this image feels absurd...you’re beginning to understand what air travel is like for wheelchair users.
We would never just toss your legs into the cargo hold.
We would never tell you, “Sorry, your legs were damaged.”
Yet every day, airlines treat wheelchairs this way.
My wheelchair isn’t luggage.
It’s my legs.
My independence.
My freedom.
This Saturday, I’ll be traveling solo for the first time in a long time, to Washington, D.C. for the National Council on Independent Living Conference and then to Baltimore for Johns Hopkins Myelitis Day.
I’m excited but the second I transfer to the aisle chair leaving my wheelchair in the hands of strangers to be taken into the belly of the plane, fear and a question entangle my insides…
Will my wheelchair make it to my destination and in one piece at that?
For us wheelchair users, that’s not a hypothetical. It’s reality. My wheelchair has been lost and damaged a few times and it isn’t cheap!
What makes this even harder is that we already know how to do better. I had the privilege of helping draft legislative language with my state’s congressional delegation Senator Martin Heinrich and Senator Tammy Duckworth’s office on the Air Carrier Access Amendments Act, legislation designed to strengthen protections for wheelchair users in air travel.
It’s been 3 years!
Congress…Accessibility can’t stay parked in committee. It’s time to move this bill forward.
My wheelchair isn’t baggage.
It’s part of my body. Rock ON!
♿️✈️🤘💜🏁
07/14/2026
Today is the deadline to submit a public comment on the proposed federal rule governing Federal Financial Assistance by the Office of Management and Budget.
I just wrote mine!
If you believe scientific merit, disability expertise, and evidence based evaluation should remain central to research and innovation, make your voice heard before 9:59 p.m. MT / 11:59 p.m. ET. I know it’s quick!!!
This photo represents something I deeply believe in: science, curiosity, and the power of nonprofit innovation.
Years ago, my foundation partnered with my doctors who worked at Johns Hopkins at the time and the PVA to study the Neurological and Psychological effects of scuba diving on the paralyzed body.
Dr. Sanjay Gupta came to learn about our study for a news segment because we believed disability innovation deserved to be studied, not simply admired. I was having sensations in my bladder and legs at depth when I went scuba diving that would last for a few minutes above the surface so I insisted to my doctors, “We Must Study This”!
I've spent the last 27 years living with paralysis.
I have lived the science.
I've felt it.
I've studied it.
I've dedicated my life to advancing it.
Let's keep scientific merit, disability expertise, and evidence based evaluation at the heart of research and innovation.
Link for Comment: https://www.regulations.gov/document/OMB-2026-0034-0001
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