Honorees
Honored Heroes share their stories to let other patients know they are not alone on their journeys — because no one should face the challenges and uncertainty of inflammatory bowel disease (IBD) in isolation. Through their stories, Honorees raise awareness of these diseases, raise funds to support the Foundation’s mission and inspire hope in those living with IBD.
To nominate a Take Steps Honoree, please complete this form.
Samuel Jouan - Kathleen Waters - Dr. Robert Frankel
Samuel Jouan - Honored Pediatric Patient
The year 2020 was a hard time for many people, through the unknowns of COVID-19, social distancing from friends, and online schooling. Our family faced a unique battle. Samuel, at the time, was an eight-year-old whose quiet confidence always guided him, but he started to feel the stress of the world.
As the oldest of three boys in a household that was anything but quiet, Samuel's struggle went unnoticed during some of that year. Stomach aches and headaches became regular for Samuel, their severity and frequency escalating as the months rolled by. In the hustle to keep our small family business afloat and the distractions of daily life, his increasing visits to the restroom and unintended naps still were flying under our radar.
It wasn't until April 2021, during Samuel's nine-year-old well visit, that the stark reality of his situation began to unfold. The doctor, noting Samuel's lack of weight gain, raised concerns. Subsequent visits to a GI specialist, extensive lab work, and a week-long stay at CHOP culminated in a life-changing diagnosis on May 19, 2021 – Crohn's disease, ironically revealed on World IBD Day.
Through tube feeding therapy, paying attention to his diet, and biologics, Samuel began his rebound quickly! We are forever grateful for CHOP and their care! Samuel is now a thriving middle school accelerated honors student. He is testing for his second-degree Black Belt in Taekwondo this year and enjoys competing in tournaments. Samuel has a love for music and plays the baritone in the school jazz band. However, his favorite pastime and way to de-stress is Lego building. Finding ways to express creativity brings Samuel the most joy.
Samuel has not allowed this disease to be his entire identity. He knows that it’s only a part of the story that he gets to write, and his flare-up was only a chapter. Samuel has shown his family and friends what it is like to be a true warrior. He not only wears his Black Belt on the mat, but he is a true fighter to the core.
In 2023, we experienced our first Take Steps event, overwhelmed by the outpouring of love and support from family, friends, and the community. Our fight continues, as Team Samuel's GI Joes is committed to Take Steps with unwavering determination until cures are discovered or every patient battling IBD achieves remission. We could not be prouder and more honored for Samuel to represent all pediatric IBD patients at this year's Take Steps event as an honored hero.
Support Samuel's GI Joe's Here.
Kathleen Waters - Honored Caregiver
In January of 2020, our daughter, Magdalena, had severe stomach cramps and we took her to the hospital. After a CAT scan and a colonoscopy, the tests confirmed the diagnosis of Crohn's disease. Travis and I found ourselves worrying about how this would affect Maggie’s life in the long-term. She was only 16 and we had never heard of Crohn’s disease.
Maggie’s diagnosis coincided with the spring semester of her junior year of high school, a pivotal time when she was supposed to be showcasing her leadership for college applications. Instead, we found ourselves facing a week-long hospital stay at Nemours Children’s Hospital. Returning home from that stay, Maggie still had many symptoms – fatigue, some depression, and persistent stomach pains. Maggie’s grandmother, a seasoned RN, was able to come and help with her medications and provide the loving care that only a grandma can give.
Remicade treatments were started with the hopes of reducing the inflammation, but doctors agreed that the disease was too advanced and recommended a bowel resection surgery. The pandemic added another layer of challenge, restricting in-person support from family or friends during hospital stays. I was the only one who could really be with Maggie through it all from start to finish.
Once past these medical stays, Garnet Valley High School helped with offering tutoring and counseling to ensure Maggie could catch up on missed schoolwork and maintain her academic success. Today, she is a third-year student at Penn State pursuing bio-behavioral health. Inspired by her own journey with her IBD, I’m so proud of her for using her personal experience to give back. She works as a crew chief for Penn State Emergency Medical Services, is an active participant in THON, and along with our dog provides pet therapy visits. She’ll be traveling to Los Angeles and Ecuador to provide healthcare – and we’re thrilled that she’s made it to remission and can live out her dreams. When she graduates, she will have expertise in biology, chemistry, psychology, nutrition, and global health. It’s amazing that just four years ago, I was the only caregiver allowed in to be with her during her entire surgical stay. It’s been inspiring and incredible to me to watch her resilience and perseverance since that week together.
As the Honored Caregiver this year, I've come to realize that my role extends beyond providing care myself; it's about rallying an army of compassionate individuals who collectively make the journey smoother. I got involved with the Crohn’s & Colitis Foundation which has been a source of guidance, information, and invaluable support. Joining the Take Steps Executive Council has allowed me to see the impact and be a part of the incredible work we’re doing here together. I have been able to lean on the Foundation on various topics such as how to receive Remicade and Inflectra while our college student is sometimes at home and sometimes at school, how to start a college club for students with IBD and even help documenting an emergency medical plan while Maggie is traveling. We’re not always sure what we’ll face next, but we’re grateful to know we always have an incredible resource in the Foundation.
I share this honor with my husband Travis, Maggie’s grandparents and siblings, the physicians, physician assistants, nurses, dieticians, patient advocates with our insurance company, our employers, friends who visited and sent cards, flowers, balloons and of course, our Church who led a prayer effort to support us. Our entire community has now learned about Crohn’s disease and will hopefully be more educated when they meet others with these diseases in the future.
Most of all, I share this honor with Maggie. It’s an honor to be your mom and watch you conquer everything you tackle.
Support Kathleen and Team Walking with Waters here.
Dr. Robert Frankel - Honored Health Care Provider
Since returning to my hometown of Philadelphia after completing my gastroenterology fellowship in 2017, I joined the team at the Main Line branch of US Digestive Health.
My interest in taking care of people with Inflammatory Bowel Disease (IBD) began early on in my training where I worked in a dedicated IBD clinic, attended weekly virtual IBD case conferences, and attained a Foundation funded fellowship to expand my skills and knowledge to better help IBD patients. I am incredibly grateful for all those opportunities to learn and grow with experts in the field. This experience allowed me to observe the power of a strong patient-physician relationship and the impact it can have on creating life-altering care.
As I gained experience with treating IBD patients, I quickly began to recognize the emotional, psychological, and physical burdens brought on by these terrible diseases. I was committed to making a difference for them.
One of the ways I do that is through my involvement with the Crohn’s & Colitis Foundation. I have spoken at patient education days, created video content with the “Princess Promise”, served on the Philadelphia/Delaware Valley Chapter medical advisory committee, and have been a member of the Take Steps Executive Council for many years. I have been a long time Take Steps team captain, raising funds and securing sponsorship to help make this incredible Philadelphia event the #1 event across the country.
I have had the pleasure of providing care to many IBD patients and I am continually reminded of the unmatched strength and resolve of people battling this disease. I have a deep appreciation for the patients who entrust me with their care as we navigate their way to Mount Remission together. On a larger scale, I feel enriched as a member of this IBD community. This community is so special due to the perseverance of our patients, the unwavering support of patient advocates, family and friends, the dedication of the staff of the Crohn’s & Colitis Foundation and, of course, the care and collaboration among medical office staff, nurses and physicians. I am extremely honored to be recognized in a setting full of heroes.
On a personal note, I wanted to make it clear that while I remain terrified of broadcasting live with Preston and Steve, I am always willing to face my fears and do whatever it takes to help with the Philadelphia Take Steps event and this IBD community. You can check out Radio Rob’s debut last year on WMMR’s Preston & Steve show here.
