Our Vision

This section outlines the journey of Privileged Pilots, the major challenges we’ve faced, and where we’re headed next. Here, we highlight some of the initial big-picture issues we’ve identified and the future goals we aim to accomplish as advocates for both the medical and aviation communities.

From Awareness to Action

“So… what’s next?”

It’s a question we find ourselves asking often — as advocates, as survivors, and as visionaries.

Our original mission has been a success: spreading awareness about sickle cell disease through every medium possible — community events, public speaking, storytelling through news outlets and talk shows, and of course, our beautiful casual wear that sparks conversation wherever it’s seen.

But awareness alone isn’t enough anymore. As we continue to evolve, we’re shifting our focus toward something bigger — creating tangible change for the sickle cell community.

A New Chapter: Turning Awareness Into Impact

Our next chapter is about action. While we definitely plan to continue to attend conferences like OBAP and other industry events that give us a platform to share our stories, we’re also aiming to step into spaces where policy meets advocacy — because that’s where real change happens.

We aim to:

Engage in critical conversations with lawmakers, healthcare leaders, and policymakers who have the power to shape access to life-changing treatments like Gene Therapy.
Assist in breaking down the barriers, or at least minimize the resisting factors, that typically prevent patients from receiving these treatments — factors like limited facility locations, restrictive insurance requirements, and lack of infrastructure or education around eligibility.
Ensure transparency in how opportunities — whether medical or career — are presented to people living with chronic illnesses or disabilities.

These are not abstract goals for us — they’re personal as these things are things we’ve experienced first hand.

Navigating the Cure: Daniel’s Journey

For Daniel, navigating the Gene Therapy process wasn’t just an act of hope — it was a mission.

What should have been a straightforward medical journey turned into a long, emotional process filled with obstacles that highlight the very issues we’re trying to change.

To qualify, Daniel had to prove that he was medically in need of the treatment — which required documentation of multiple hospitalizations within a two-year period. Even after meeting that benchmark, insurance approval was not immediate. There were layers of prerequisites — intensive scans like MRIs with contrast, psychological evaluations, and extensive lab work — all before the real wait even began.

And then came the hardest part: waiting six more months for final approval.

Here’s a brief look at the timeline:

December 2023: Daniel first asked his treating physician about Gene Therapy.
January 2024: He met with the transplant team at Manning Family Children’s Hospital to discuss the potential of a bone marrow transplant.
September 2024: The team officially decided that Gene Therapy would be the best path forward.
April 2025: Daniel received final approval and began treatment, starting with an exchange transfusion and port placement.

This was a nine-month journey — not because of medical uncertainty or hesitation on the patient or doctor’s end, but because of systemic delay.

Breaking Barriers to Access

Stories like this are why we’re motivated to advocate for greater access to life-changing treatments.

Right now, too many patients face barriers that make getting cured feel out of reach — whether it’s the distance to qualified treatment centers, insurance limitations, or a lack of awareness about how to even begin the process.

We want to change that.

Our vision is to build partnerships that help bridge the gap between patients and treatment — including with larger corporations and transportation companies that could provide charitable flights to families traveling long distances for care.

We also want to simplify the information gap — ensuring that patients and their families have access to clear, easy-to-understand resources about eligibility, requirements, and the treatment process.

Because no one should lose hope simply because of where they live or what insurance they have.

Transparency and Career Accessibility

Another focus for our future is career transparency — especially for individuals with chronic illnesses or disabilities who are pursuing specialized professions.

For example, the aviation industry has stringent medical standards, and for Daniel and Kyle, understanding how those standards applied to sickle cell disease was nearly impossible at first. There was no clear guidance, no accessible information, and no advocacy channel.

For Daniel in particular, getting cured wasn’t just about improving his health — it was the only path to potentially qualify for an FAA medical certificate.

The problem wasn’t just the rule itself — it was the lack of transparency around it.

Many people living with disabilities are led to believe they will always be limited — either physically or systematically — and that belief is reinforced when systems lack clarity.

We want to challenge that. By sharing our stories and working with regulatory agencies, we aim to make career pathways clearer, so people living with conditions like sickle cell are informed, empowered, and no longer left in the dark.

Bridging Gaps & Building Solutions

So how do we help solve the problem?

By continuing to bridge gaps — between families and treatment, between awareness and access, and between dreams and possibility.

We believe one of the most powerful tools in doing so will be sharing our journeys in both digital and physical forms — through memoirs, books, and other publications that walk readers through how we navigated the cure process firsthand.

These resources can serve as blueprints for other families, making what once seemed impossible suddenly feel achievable.

Inspiring Hope in Tangible Ways

Awareness brought people to the conversation. Now, inspiration will keep them there.

We genuinely hope to one day create charitable gift baskets for patients and their families — especially children currently in the hospital or undergoing treatment — to bring them even a small moment of comfort and joy during such a difficult time.

These baskets would likely include:

Pamphlets and guides with credible resources for navigating treatment and support systems.
Memoirs by the founders — personal accounts of overcoming the impossible.
Comfort items like sweatshirts, beanies, and blankets designed by Privileged Pilots to remind patients that hope and healing are within reach.

Beyond the items themselves, these baskets represent connection — a reminder that they are not alone in their fight, and that someone who once stood in their place made it through.

The Vision Ahead

As for what’s next — we see a future where Privileged Pilots continues to expand beyond apparel into advocacy, storytelling, and meaningful collaboration.

Kyle Registre and Daniel Cressy will continue pursuing their careers in aviation — not only as pilots, but as symbols of perseverance and proof that determination can overcome any limitation.

Through partnerships with corporations, hospitals, and advocacy groups, we’ll continue to expand our impact — bringing awareness, access, and inspiration to communities worldwide.

Because ultimately, the story of Privileged Pilots has never been just about flying.

It’s about rising above every obstacle, inspiring others to do the same, and proving that with faith, resilience, and community — nothing is impossible.