If you have a child with inflammatory bowel disease, we have a group of parents, patients, and caregivers for you to join.
Who We Are.
The IBD Family Advisory Council began one year ago out of a desire to meet, support, and discuss ways to improve care for our children.
When our children were first diagnosed with Crohn’s or Ulcerative Colitis, we asked: “What does this mean for the future of my child? Who can I talk to who has been through this?”
It was a comfort to connect with other families whose children struggled with IBD for months or even years. It was inspiring to hear their stories of overcoming challenges as well as discuss difficulties that still exist.
What We Do.
The IBD Family Advisory Council works with the ImproveCareNow (ICN) team to discuss improvements and to implement them.
ICN has an amazing model where clinicians, researchers, parents, and patients work together to improve care for kids with IBD.
We have accomplished a lot this year! We developed a packet of information that is given to newly diagnosed patients, we attended ICN community conferences, we spoke at the Vermont School Nurses Conferences, we helped with implementation of a new depression screening, and we are working toward improving the IBD section of the UVM Children’s Hospital website.
Please Join Us!
You may have noticed the word “improve” multiple times. Because continuous improvement is our goal, we would love YOU to consider becoming a part of our advisory council!
The Pediatric IBD Advisory Council meets once a month on Monday evenings at the UVM Medical Center’s Fanny Allen campus. If you cannot come to the meetings, we would still love to connect and keep you up to date on what we are doing to continuously improve care for our children.
To learn more, please contact our Patient and Family Centered Care Coordinator: firstname.lastname@example.org
Claire Monachino and Danielle Bevins are co-chairs of the UVM Children’s Hospital Pediatric IBD Advisory Council.
Claire lives in Underhill with her husband and their two children. She is employed at Endyne, an environmental laboratory, in Williston. In 2014, her daughter Olivia was diagnosed with Crohn’s Disease. Soon after, Claire became a member of the ImproveCareNow(ICN) team at The University of Vermont Children’s Hospital. Through ICN, Claire has met families both local and nationwide who struggle with Crohn’s Disease and Ulcerative Colitis. The ICN model of patients, physicians and caregivers working together was Claire’s inspiration for starting the Pediatric IBD Family Advisory Council.
Danielle lives in Colchester with her husband and their two children, Grace and Ryan. Danielle was diagnosed with Crohn’s disease twenty years ago. Her son Ryan was diagnosed with Crohn’s Disease three years ago. Once Ryan was diagnosed, the family decided to raise awareness about IBD in order to do something positive. When the Pediatric IBD Advisory Council started up earlier this year Danielle was quick to join and has been an active member ever since.