A Whirlwind Week: Harvard, Strategic Collaborations, and the Road Ahead
This past week was nothing short of transformative for me and for CortiCheck™. ✨
At Harvard for Global Genes
I had the privilege of attending the Global Genes Rare Drug Development Symposium at Harvard—a gathering of brilliant researchers, biotech leaders, and advocates shaping the future of rare disease innovation.
Everywhere I turned, people wanted to talk about adrenal insufficiency and CortiCheck™. During breaks, attendees came up to me because their friends back home had told them to watch for anyone speaking about this work. That kind of ripple effect reminded me that our message is spreading further than I even realized—and that this innovation is deeply needed.
Strategic Collaboration Underway
One of the highlights of my trip was sitting down for hours with the CEO of a pioneering medtech company working in stress and hormone monitoring. We shared a long, meaningful strategy session and discovered we share the same vision: to make sure the patient voice is heard loud and clear every step of the way.
This strategic collaboration underway will help us move from concept → creation → validation → patients. And it’s exactly the kind of relationship that makes me believe in the future we’re building together.
Personal Milestones
On a more personal note, this was also the first time I traveled alone since facing significant vision loss. Airports, hotels, and big events can feel overwhelming even with full vision—so stepping into that challenge solo was daunting. But I did it. And in the process, I rediscovered just how much strength we can find when we allow ourselves to step into the unknown.
Gratitude and Next Steps
I left Boston encouraged, energized, and more determined than ever to keep moving CortiCheck™ forward. Every conversation, every connection, and every bit of encouragement makes a difference—not just for me, but for CortiCheck™ and the families we serve.
🚀 If you feel called to help us keep moving forward while we continue working toward major funding, I would be deeply grateful for your support:
Support CortiCheck on GoFundMe →
For Clarity: Your Questions Answered
I’m deeply grateful for the enthusiasm and thoughtful questions many of you have shared about CortiCheck™. I also understand how important transparency is in the health space, where families are asked to trust new innovations. Here are answers to some of the most common questions.
Team & Governance
Dr. Xiaomin Fan and Mr. David Carpi were among the earliest collaborators who helped us explore biosensor feasibility. Today, CortiCheck™ is advancing through a strategic collaboration underway with a medtech company whose technology is already much closer to prototype. Dr. Fan and Mr. Carpi remain valued advisors.
To avoid conflicts of interest, I stepped down from the board of Adrenal Insufficiency United. CortiCheck™ now advances under United4Rare LLC, with finances and decision-making kept fully separate.
While Jennifer Knapp holds roles in both United4Rare and AIU, she does not govern or make decisions for CortiCheck™. Her focus is on separate community initiatives.
Science & Validation
We are preparing for a global clinical trial, with clearly defined biomarkers and endpoints that give us confidence in a strong validation path. Our medtech collaborator has already advanced to prototype testing, with sensitivity, reproducibility, and specificity studies underway. These results will be shared once peer-reviewed. All human studies will be registered on ClinicalTrials.gov and European registries once protocols are finalized.
Regulatory & Quality
In the U.S., CortiCheck™ is expected to follow the FDA De Novo pathway for novel diagnostic devices. In Europe, approval will require compliance with the IVDR framework leading to CE-marking. We are currently working with governance and regulatory advisors to determine the best fit and ensure that CortiCheck™ advances under the most appropriate, patient-centered pathway.
Transparency & Fundraising
So far, CortiCheck™ has been supported entirely through community crowdfunding. While these donations have kept momentum alive, they are not pre-orders and do not guarantee access to the device. As a thank you, donors will be prioritized for early access once CortiCheck™ is ready.
At the same time, we are actively building a more robust fundraising strategy with our proposed new collaborators. This includes pursuing capital investment, grants, and global partnerships to ensure CortiCheck™ has the resources it needs to move through validation and into patient hands.
Looking Ahead
This journey is bigger than me—it’s powered by the families, advocates, clinicians, and allies who believe in a safer future for people living with adrenal insufficiency. With every step, CortiCheck™ is moving closer to becoming a tool that can save lives in real time.
Your encouragement, your questions, and your support fuel this mission. Together, we’re proving that when patients lead, innovation follows.
💙 Thank you for walking this road with me. The best is still ahead.
