A Front-Row Seat to Hope: My Volunteer Leadership Summit Reflections

Foundation Social Media Ambassador Kimberly Hooks

As a patient advocate living with ulcerative colitis, my journey with IBD has changed my life in countless ways. Through every challenge, I’ve found purpose in sharing my story to uplift and encourage others. I’m proud to serve as a Crohn’s & Colitis Foundation social media ambassador and volunteer.
 

The Crohn’s & Colitis Foundation’s Volunteer Leadership Summit brings together volunteers, advocates, and leaders from across the country who share a common goal: improving the lives of everyone affected by IBD. At the 2026 Summit in Denver, I had the privilege of serving as a reporter—interviewing speakers and leaders and shining a light on the incredible impact volunteers make every day. 
 

In honor of National Volunteer Week, I’m sharing some reflections on what I experienced and learned. As both a patient and advocate, this opportunity was truly meaningful to me. Being in that room reminded me how powerful it is to be surrounded by people who truly understand this journey.

Day One: Vision, Innovation, and Hope

President & CEO Michael Osso

The opening State of the Foundation session with Michael Osso, President & CEO, set a powerful tone and reminded me just how much heart, purpose, and momentum exist within this community. He walked us through the Foundation’s long‑term vision and strategic priorities, emphasizing how the Foundation’s 14,000 volunteers are “fuel for the soul” of the mission and are driving real impact in awareness, support, and research. As a volunteer and patient, it was inspiring to hear how deeply the Foundation is investing in a patient‑first approach, expanding resources, launching new tools like an AI chatbot for their website, and pushing hard on the federal and state levels to remove barriers to care.
 

Alan Moss, MD, Chief Scientific Officer

Hearing from Alan Moss, MD, Chief Scientific Officer, and Russell Wyborski, PhD, Senior Director of Research for IBD Ventures, brought the Foundation’s scientific strategy—and its urgency—to life. They explained that while IBD care has improved, many patients still don’t have lasting, effective treatments. The Foundation is tackling this challenge by strengthening clinical trials, building global research networks, and collaborating with industry and academic partners through IBD Ventures. They also spoke about the continued need for better treatment options and how the Foundation is working to help move promising research, therapies, and innovation forward. As someone living with ulcerative colitis, it was encouraging to hear about the real progress being made and the work happening behind the scenes to improve the future of IBD care.

Another especially meaningful moment for me was talking to Annette Martinez, incoming chair of the

National Board Chair Annette Martinez

 National Board of Trustees. During my interview with her, Annette shared that she has been living with IBD for 21 years and that it wasn’t until about 10 years into her diagnosis that she was introduced to the Crohn’s & Colitis Foundation. Before that, she felt isolated and uneducated about her disease. Hearing how the Foundation gave her both community and resources was incredibly powerful. When she said, “Together we can make a big difference,” it was such a simple but meaningful reminder of why volunteer leadership matters so much.

Celebrating Champions of Care and Commitment

The first evening’s awards ceremony, celebrating chapter achievements and two national honorees, was a highlight of the summit for me. It was especially meaningful to see Michele Rubin, MSN APN, MSN, CNS, CGRN, and Dr. Robert Reiss recognized for their incredible contributions. Michele, recipient of the Rosenthal Award for Catalyzing Improved Patient Care & Support, is an advanced practice nurse and Associate APN Director of the IBD Center at the University of Chicago Medicine, and learning about her work—especially helping create a J‑pouch‑specific clinic—deeply resonated with me as someone whose ulcerative colitis journey has included surgery. Dr. Reiss, an internal medicine physician at UCLA Health and recipient of the Modell Award for Catalyzing Mission Advancement, has turned the experience of having two of his three children diagnosed with IBD into decades of volunteer leadership and fundraising. Seeing them both honored was a powerful reminder that real change happens because people choose to show up and stay committed to this work.

Finding Strength in Adversity: Lessons from Erik Weihenmayer

Keynote Speaker Erik Weihenmayer

Erik Weihenmayer—world-renowned adventurer, author, and motivational speaker—shared his extraordinary story at the summit, inspiring the IBD community with his message of resilience, connection, and perseverance. As the first blind person to summit Mount Everest—and someone who has kayaked the Grand Canyon and climbed some of the world’s highest peaks—he’s overcome challenges many would consider impossible. But what left the greatest impression wasn’t just his achievements; it was his mindset and the wisdom passed down from his late father: “Rest if you must, but don’t you quit.”

During my interview with Erik, he shared powerful advice that resonated deeply with the IBD community: “Reach out to a great organization like the Crohn’s & Colitis Foundation and get your community around you. You can’t do it alone.” His words were a moving reminder that even in the face of adversity, strength and purpose are found through connection, perseverance, and refusing to give up.

How Your Time, Energy, and Voices Are Moving Us Forward

As we celebrate National Volunteer Week, I feel deeply grateful for every person who shows up for the IBD community and powers our mission forward. To the volunteer leaders I had the opportunity to meet at the Summit, thank you for the energy, ideas, and heart you bring to this work—and to the many volunteers serving through local chapters, advocacy efforts, community events, support groups, Camp Oasis, and beyond, please know that your commitment is seen and it truly matters.

If you are already volunteering, I invite you to share your volunteer story on social media and inspire others to get involved. You can also fill out our Volunteer Interest Form to explore even more ways to make a difference—whether by leading a support group, volunteering at Camp Oasis, or helping advance research. And if you haven’t already, consider joining our Advocacy Action Network to help shape policies that improve the lives of everyone affected by IBD. 

As someone living with ulcerative colitis, I’m grateful for opportunities like this to use my voice, share my story, and continue showing up for the IBD community.