A Thank You Letter to Jill Horan

Let’s all stop to take notice of one of the truly wonderful people around us: Jill Horan. The following reflection was written by incoming parent co-leaders, Heidi and Ildiko, as a celebration of the dedication, creativity, passion and kindness that Jill has brought to her careful tending of the ImproveCareNow Parent Working Group (which has announced a new name, by the way). 

Let's begin with how we (Heidi & Ildiko) met Jill.

Heidi met Jill in Fall 2019 - at the last in-person ICN Community Conference before they went remote. She remembers sitting in one of the conference rooms and watching Jill lead a Parent Working Group meeting, thinking: 

Ildiko met Jill in the most “2020s” kind of way: on Twitter. Getting to know one another solely online:

Fast forward, 2.5 years and we have been asked to follow in Jill’s outstanding footsteps and co-lead what has long been known as the Parent Working Group (PWG) and has recently been renamed the Parent/Family Advisory Council (PFAC). We are humbled and know we have big shoes to fill, but also that we have a shared passion and energy for this work. We would like to share the following reflection and thank you to Jill - to recognize and celebrate all she has helped to nurture and grow.

Whether as a connection for Heidi to her mother, or the newfound pandemic hobby for Ildiko, we find we share something else in common with Jill (other than leading a group dedicated to teaching, learning, advocating and improving care for young people with Inflammatory Bowel Disease or IBD) – we all enjoy time spent in nature and gardening.

There is something deeply rewarding about the journey of tending to plants and seeing them grow to their full and beautiful potential, often despite myriad challenges. And when you are a parent of a child (or, in Jill’s case, two children) with IBD, nature can provide a much-needed respite from stressful and busy lives. It's incredibly important that we, as parents and caregivers, remember to take care of ourselves too.

Plants are, in some ways, like organizations. They thrive with thoughtful planning, resources, harmony, tending and, often, rolling-up of sleeves and doing the work. As gardeners and volunteers, we know that the more people we have working together, the more we can accomplish. In a world where the only real constant is change, especially these last two years, the more we unite and put thought, effort, and care into something, the more we will all get out of it. As we (Heidi & Ildiko) worked together to write this thank you to Jill, we both felt a strong connection to this analogy of our newly renamed PFAC as a beautiful garden of parents and family members that has been nurtured by Jill and others and is ready to bloom again.

If you have had the pleasure to meet or work with Jill, you will know she embodies all of the qualities of a leader, or in sticking with our garden analogy, a “head-gardener.” She has vision, passion, commitment, knowledge, and strength. Jill strongly values diversity, and she has a remarkable ability to bring people together. Jill is of the highest moral character and treats everyone with deep respect and kindness. There is no question that our PFAC garden would not be what it is today without her hard work and caring attention.

Of course, Jill has had help tending the PFAC garden. Many dynamic leaders, past and current, deserve a hearty thank you for rolling up their sleeves as well: Shellie, Maria, Carrie, Pam, Maria, Kathy and Martha - thank you for helping to tend and grow our PFAC.

Tending a garden is never without challenges. Jill, along with other caregiver leads, faced immense change and challenges with COVID over the last two years. Despite this, Jill made sure that everyone felt valued, and she exhibited artistic leadership qualities (did you know that Jill is, among her many talents, a wonderful artist?). She remained passionate, she nurtured creativity and diversity, and she always reminded everyone to give themselves grace when navigating challenges.

A major challenge Jill and others faced was the shift from in-person ICN Community Conferences to a fully online format. As active teachers and learners at these twice-yearly events, the move to Zoom presented many logistical challenges. But perhaps the biggest challenge of all was the loss of opportunity for parents and caregivers to come together face-to-face. Maintaining connection and motivation, especially as everyone became fatigued by online meetings and interactions, is definitely a hurdle many of us have struggled with. Through it all though, Jill continued to find creative ways to keep the momentum going. A handful of things she accomplished in the past two years include:

💚 Continuing to advocate for and help various ICN committees and support the amazing Patient Advisory Council (PAC)

💙 Delivering a powerful presentation to the Food & Drug Administration (FDA) with ImproveCareNow and The Institute for Advanced Clinical Trials for Children (I-ACT)

💚 Lending her voice and, more importantly, her shoulder and heart, to those who just needed to be heard

💙 Ensuring new ICN parents, caregivers and family members felt welcome and valued

💚 Helping her Boston-based team come up with great fund-raising ideas and coffee-chats for their local IBD communities

Jill did all of this while managing her busy career and juggling being a mom to three wonderful kids, two with IBD, and spending time with her family and friends. As we look back and express our gratitude to Jill - we can say that while her tenure definitely had its challenges, it was truly full of accomplishments.

Let’s pause to be grateful we have such a wonderful leader and friend in our circle. As caregivers navigating the pediatric IBD marathon, there is beauty and vulnerability in the people of ImproveCareNow, like Jill. Tapping into this can be so helpful as we bravely continue to work to improve care and outcomes for young people living with this disease from within our PFAC and our ICN community. As we step into this new leadership role, Jill is still by our side cheering us all on, sort of like we are newly planted flowers in a garden she helped nurture and manage. We are ambitious, determined, creative, positive, and supportive. We look forward to getting to know you and hope more of you will join us to see what we can grow, together!

Heidi Riechel & Ildiko Mehes, ICN Parent/Family Advisory Council Co-Chairs

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Put in your time and energy on behalf of someone else. No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:

• Invite someone to stay #InTheLOOP with IBD stories on the ICN blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint 

• Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 

• Invite a parent or family member of a child with IBD to join the Parent/Family Advisory Council - "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria

• Invite someone to download free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint

• Invite someone to Join Our CIRCLE - "Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa