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

Apr 3

My name is Kimberly M. Hooks, and I'm a patient advocate living with ulcerative colitis. My journey with IBD has changed my life in many ways, and through every challenge, I've found purpose in sharing my story to support and encourage others. I'm honored to serve as a Crohn's & Colitis Foundation social media ambassador and volunteer.

**Kimberly Hooks, National Patient Advocate and CCF Social Media Reporter**

The Volunteer Leadership Summit brings together volunteers, advocates, and leaders from across the country who are united by a shared mission to improve the lives of those affected by IBD. At the 2026 Summit in Denver, I had the opportunity to serve as a reporter, interviewing leaders and speakers while highlighting the incredible impact of volunteers.

In honor of National Volunteer Week, I'm sharing a few reflections on what I experienced and what I learned. As both a patient and advocate, this experience meant so much to me.

Thursday's sessions were such a strong and inspiring way to begin the Summit. The opening session with Michael Osso, President & CEO, set the tone and reminded me just how much heart, purpose, and progress exist within this community. Hearing from Alan Moss, MD, Chief Scientific Officer, was also a highlight. As someone living with ulcerative colitis, it meant a lot to hear about continued progress in research, treatment, and patient care. One of the biggest takeaways for me was the reminder that there is still so much hope ahead for those of us living with IBD.

One especially meaningful moment for me was hearing from Annette Martinez, Incoming Chair of the National Board of Trustees. During my interview with her, Annette shared that she had 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.

The awards ceremony was a highlight of the Summit for me. It was especially meaningful to see Michele Rubin and Dr. Robert Reiss honored for their incredible contributions.

Michele Rubin, 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. Learning more about her work, especially her role in helping create a J-pouch-specific clinic, really resonated with me as someone whose ulcerative colitis journey has included surgery.

Dr. Robert Reiss, recipient of the Modell Award for Catalyzing Mission Advancement, also left a lasting impression on me. After two of his three children were diagnosed with IBD, he turned his family's experience into purpose and has since made a tremendous impact through decades of volunteer leadership and fundraising. Seeing both of them honored was such a powerful reminder that real change happens because people choose to show up and stay committed to this work.

One of the most powerful moments of the Summit was Erik Weihenmayer, keynote as an Adventurer, Speaker, Author, and Teacher. Hearing Erik's story was incredibly inspiring. As a blind person, he has faced challenges many would consider impossible to overcome. Yet, he has gone on to accomplish extraordinary things, including becoming the first blind person to summit Mount Everest. But what impacted me most wasn't just his achievements; it was his mindset.

Erik's message really hit home for me. During my interview with him, one thing he shared that really stayed with me was: "Reach out to a great organization like CCF and get your community around you. You can't do it alone”.

“Rest if you must, but don't you quit." - Erik Weihenmayer

**Kimberly M. Hooks and Erik Weihenmayer**

That message felt so relatable to the IBD community and was such a powerful reminder that even in the face of adversity, there is still strength and purpose.

As we recognize National Volunteer Week, I feel especially grateful for the people who continue to show up for the IBD community.

To the volunteer leaders I had the opportunity to meet at the Summit, thank you. And to the many volunteers serving through local chapters, advocacy efforts, community events, support groups, Camp Oasis, and beyond, please know that your work matters deeply.

If you've ever thought about getting involved, there is a place for you. Whether that means sharing your story, supporting an event, or volunteering in other ways, your voice can make a real difference.

Learn more here: Volunteer with the Crohn's & Colitis Foundation.

Looking around the room at so many volunteers, advocates, and leaders, I was reminded how powerful it is to be part of a community that truly understands this journey.