Harnessing the passion and insight of volunteers, the Foundation has launched its bold new four-year strategic plan (2024–2028), setting the stage for transformative progress in IBD research and patient care.

By the Community, For the Community

Patients, caregivers, researchers, and healthcare professionals shaped every aspect of this strategy, ensuring it reflects the real-world needs of the IBD community.

“Our strategic plan is not just a document — it’s an anchor that drives us forward,” says Orna G. Ehrlich, MPH, chief of staff and impact, who co-led the year-long process with Foundation President and CEO Michael Osso. “It was shaped by diverse voices who provided invaluable insights.”

A 50-member task force included 25 percent volunteer leaders. To ensure broad input, the Foundation launched a new survey, collecting feedback from over 900 respondents (60 percent of whom were patients) on the priorities they believed should shape the Foundation’s future.”

“We got incredibly valuable insights that helped us draft the plan’s objectives,” says Ehrlich. Objectives were then shared in multiple rounds of feedback with the National Scientific Advisory Committee, chapter presidents, and additional volunteer groups before being widely broadcast for public commentary.

“Being part of the task force was another great example of how the Foundation includes patients and caregivers,” says Erin Wilson, NW Chapter Board Vice President and a mother to her 14-year-old “Crohn’s warrior.” “It was rewarding to collaborate with people at the chapter and national offices on the issues facing patients and their families.”

Guided By Core Objectives

The plan is built around four core mission-focused objectives, with targeted goals to drive research, expand care access, and enhance patient education:

• Accelerating understanding of IBD prevention and progression
• Fostering groundbreaking innovations toward cures
• Enabling access to quality patient care
• Serving as the principal resource for the IBD community

The strategy aligns with the Foundation’s Challenges in IBD research roadmap, focusing on emerging disease prevention and progression areas.

A Vision for the Next Decade

For the first time, the Foundation incorporated a 10-year vision into the plan. “Recognizing that our ultimate vision is a world free of Crohn’s and colitis, we wanted to establish clear milestones along the way,” Ehrlich explains. “This helps people see the North Star we’re working toward.

Committed to Collaboration and Diversity

Highlighting the value of volunteers in advancing the plan’s goals, Michael Osso notes that despite the world's global uncertainty during the last four years, "our strategic plan...led to remarkable progress in driving next-generation treatments, expanding access to care, and being the trusted source for the IBD community," reflecting the strong collaboration among the Foundation's volunteers, staff, community partners, and supporters to set the stage for continued progress.

Diversity, equity, and inclusion remain central to the strategy, ensuring the Foundation reaches all members of the IBD community, including those historically facing barriers to care.

Ehrlich notes that volunteer enthusiasm has been among the process’s most rewarding aspects. “People spent so much time thinking through how to shape our plan, and the excitement and appreciation we’ve received in return have been truly inspiring."

Crohn’s & Colitis Congress is the Foundation’s annual scientific conference, bringing together top researchers, clinicians, and industry leaders to share the latest in IBD care. With the Foundation involved in 299 research projects last year alone, the challenge isn’t just making discoveries — it’s ensuring the IBD community can access and understand them. That’s where the Patient Reporters come in. Each year, two patients are selected by the Foundation and the American Gastroenterological Association to attend Congress and translate key findings into blogs, social media posts, and IBD Insider, a free webinar that aired on March 6.

Meet the 2025 Patient Reporters

This year’s Patient Reporters, Natalie Hayden — a former TV news anchor, Social Media Ambassador, and 20-year Crohn’s patient — and Kaylaa’ White, an NYU dramatic writing student and Communications Chair of the Foundation’s National Council of College Leaders, helped make complex research accessible to the IBD patient community.

“It’s imperative that patients have a presence at conferences like Congress,” says Hayden. “We can ask questions that may not be top of mind for providers and then bring the news back to fellow patients and caregivers because we know what research will resonate with those living our reality.”

With this year’s theme, “Revolutionizing IBD Care,” sessions covered game-changing innovations in treatment, technology, and patient support. Here's what stood out to this year's reporters.

Key Insights for Patients and Caregivers

AI’s Expanding Role in IBD Care—AI scribe technology is gaining traction, allowing providers to focus on patient conversations while AI takes detailed notes. Another innovation, IBD Smart Note, lets patients input their health data, making it accessible for researchers worldwide and their care teams.

Non-Invasive Monitoring Improves Quality of Life—Intestinal ultrasound (IUS) is a bedside imaging tool that detects inflammation in real time and tracks disease changes within just two to three days. Easy to use, it’s becoming more accessible across the country.

A wearable sweat sensor is also in clinical trials and could help detect disease activity trends, giving doctors a real-time picture of a patient’s condition.

The Link Between Obesity and IBD—Obesity plays a larger role in IBD outcomes than many realize. Between 20-50 percent of IBD patients have obesity, which increases complications and reduces the effectiveness of biologics. GLP-1 receptor agonists (GLP-1 RAs) may be a safe treatment option but require close monitoring for GI side effects. Additionally, obesity is a major risk factor for j-pouch failure, with 52 percent of these patients needing hernia repairs after surgery.

Pregnancy and IBD

The Evolving Case in Pregnancy session delivered critical insights for patients planning a family, such as staying on medication through pregnancy being crucial, and understanding that IVF is just as effective for IBD patients as for those without it. The session also explained how the Foundation’s PIANO study is exploring how the placenta impacts IBD pregnancies.

Breakthrough Technology

Developed by Steve Axelrod and his daughter Lindsay (who has Crohn’s), the G-Tech Medical Gut Tracker is a wireless, patch-based system that tracks GI motility as patients go about daily life. A Stanford University study found that patients in flare had lower colon activity than those in remission or healthy controls. The research has already won awards.

Patient Impact

For Hayden and White, Congress was a reminder of the Foundation’s constant patient impact and the power of the IBD community. Says Hayden: “Congress is a time for collaboration and connection, and for us as patients to see the hope that remains despite a diagnosis and a disease journey that can often feel like an uphill climb."