A Message From Our Founder - Carley Cook

 A Message from Our Founder

AKG Advocacy was created by a patient, for patients, out of necessity, frustration, and—most importantly—hope. The idea for this platform took root during a deeply personal battle with my insurance company over a compounded medication I desperately needed. What I didn’t expect was how that fight would reconnect me with my lifelong passion: helping others who feel unheard, unseen, and overwhelmed by a system that’s supposed to care for them.

My Story

I was born with a genetic connective tissue disorder known as hypermobile Ehlers-Danlos Syndrome (hEDS)—a condition that was once considered rare but is now recognized as being frequently underdiagnosed. By the age of 2, I was already dislocating joints and was diagnosed with “nursemaid’s elbow.” At 4, I began experiencing daily back pain. Instead of receiving answers or compassionate care, I was told it was “all in my head,” “just growing pains,” or “normal.” My symptoms were dismissed by countless doctors for over two decades.

It wasn’t until I was 23 years old that a chiropractor casually mentioned I might have something called hEDS. After researching it myself, everything finally made sense. I was officially diagnosed in 2015—21 years after my first symptoms appeared. That moment was both validating and heartbreaking. I realized how different my life could have been if just one person had listened or advocated for me as a child.

That diagnosis changed everything.

I decided to enter the very field I once wanted nothing to do with. I became a Registered Medical Assistant, graduating in January 2017, and dove into the healthcare system to understand how it worked—so I could both advocate for myself and help others avoid what I went through.

My Work in Healthcare

As a Medical Assistant in surgical offices, I quickly became known for fiercely advocating for my patients. I scrubbed into surgeries, assisted with post-operative care, explained insurance benefits, coordinated coverage for life-saving medications, and even fought to get prescriptions mailed to patients who couldn’t afford them. I worked with many people on Medicare—especially those stuck in the dreaded “donut hole”—and did everything I could to ensure they got what they needed.

Patient care was my passion and helping others navigate the confusing world of insurance and medicine became my mission.

My Health Journey

In 2022, my own health began to decline rapidly. Even simple tasks became exhausting. I tried transitioning to an administrative role, but after being let go, I faced a difficult truth: it was time to apply for Social Security Disability. That transition also meant eventually shifting from Medicaid to Medicare—and that’s when a new wave of obstacles began.

Suddenly, medications and supplements I had long relied on were denied. In March 2025, I was prescribed Low Dose Naltrexone (LDN)—a compounded medication shown to help 28 of my 52 diagnoses, including hEDS and fibromyalgia. Despite solid medical evidence, my Medicare Advantage plan denied coverage, claiming it wasn’t proven to be safe or effective.

That denial launched a grueling process:

I fought not just for myself, but for everyone who’s ever been told “no” when they needed help the most. After presenting my case, the judge ruled in my favor—a huge personal victory, and a reminder that advocacy can make all the difference.

Why I Started AKG Advocacy

Every fight I’ve faced—against doctors who didn’t believe me, insurance companies who denied me, and a healthcare system full of red tape—has led me here.

I created AKG Advocacy because I know how hard it is.

If I can help even one person feel more confident, informed, and empowered—then this work will have been worth it.

Remember: 

Always Keep Going.
You’ve got this.
I believe in you.

- Carley Cook, R.M.A.
Founder, AKG Advocacy



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