If you noticed a bit of radio silence from me before July, there is a very good reason for that! I was working on a project that has been important to me for a very long time. So, without further ado, I’m super excited to share IBD Science for Patients with you! The website officially launched on July 1st, shortly followed by the creation of the social media platforms to share the latest articles.

This project is the culmination of everything I believe in: bridging the gap between clinical, complex scientific research and the everyday, lived experience of people like us who are living with inflammatory bowel disease (IBD).

What is IBD Science for Patients?

When you are diagnosed with a chronic condition like Crohn’s disease or ulcerative colitis (UC), the learning curve is massive. Suddenly, you are expected to understand complex medical terminology, read scientific studies, and make difficult, life-changing decisions about medications and surgeries.

But those scientific journals are not written for the average person like you and me. They are packed with medical jargon, statistics that don’t mean anything, and language that excludes us. When you’re already dealing with a flare, chronic fatigue, or experiencing brain fog, trying to decipher a medical paper is the last thing you have the energy for.

That is why I created IBD Science for Patients.

The mission is simple: to translate complex medical science into plain, accessible, and human language. I want to empower you with the knowledge you need to understand your own care, feel confident in the doctor’s office, and actively participate in the choices shaping your treatment.

We will be diving into:

• The latest IBD research: Breaking down new clinical trials, drug approvals, and scientific discoveries into clear, actionable summaries.
• Jargon busting: Translating the complicated clinical words and acronyms used by doctors and researchers so that they make sense to real patients.
• The “why this matters to us” factor: Moving past the dry data to focus on how research actually impacts your day-to-day quality of life.

Finding a peaceful pace

As many of you know from my post about why I stepped back from advocacy for a while, I have spent the last couple of years doing a lot of introspective work. Finding my flow state in the garden, qualifying as a 500-hour yoga teacher, and learning how to soothe my nervous system have completely transformed how I live with chronic illness.

I am bringing that same energy into this new project.

Building this resource has been exciting, but I am keeping firm boundaries around my energy. IBD Science for Patients is not about keeping up with a relentless, stressful news cycle. It is about creating a calm, high-quality space where we can explore science at a pace that respects our bodies.

Come and join the journey

This is just the beginning of the road for this project, and I would love for you to be a part of it. Building a community where we can learn, share, and support each other is what makes this advocacy space so special to me.

Here is how you can get involved today:

1. Explore the site: Head over to IBD Science for Patients and read through the first posts.
2. Follow along on social media: I will be sharing updates, micro-learnings, and research breakdowns regularly. Find the project on social media to make sure you never miss an update.
3. Engage with the content: If a post resonates with you, let me know! Drop a comment, share your thoughts, or ask questions. Your feedback tells me what topics we need to translate next.