Meet the National Council of College Leaders

School: University of Utah

Major: Computer Science with Minors in Psychology and Disabilities Studies

Hometown: Salt Lake City, Utah

I was diagnosed with indeterminate colitis in January of 2020, so I just passed my three year anniversary of my diagnosis! At first, I just wanted to be normal; I tried to hide my illness behind a facade of normalcy because I didn't want my peers to see me differently. But as I continued to get sicker, and my hospital visits became more frequent, it became harder to pretend I was okay. Eventually, after a year of suffering in silence, I told my story via social media, and the outpour of love and support was overwhelming.

Sharing my experience with IBD with the people I care about helped me accept my diagnosis and the life-altering effects it will have. Overall though, the last three years have been an absolute rollercoaster; I've had multiple scopes and procedures and too many needle pokes to count. I've tried different steroids and three different biologics before I found one that seems to work (I've been on it for a year and a half now!). Now, my inflammation levels are down and I'm in clinical remission, which means I've been able to resume regular daily activity. IBD forced me to grow up at a speed much faster than my peers as I became accustomed to medical jargon, a different life regime, and constant medication changes and visits, but I also became more emotionally resilient and strong in the face of adversity.

Being diagnosed with IBD has given me this newfound confidence in who I am. This is why I joined the NCCL; I wanted to use my voice, and my experiences, to advocate for such a negatively stigmatized disease. Now, as the co-chair of the group, I'm excited to continue our efforts to find a cure for IBD! I'm so thankful for this group of amazingly strong individuals!

School: Indiana University

Major: Human Biology with Minor in Spanish

Hometown: Indianapolis, Indiana

My diagnosis of Crohn’s Disease has inspired me to pursue a career as a pediatric gastroenterologist nurse practitioner. I am passionate about advocating for children and teenagers with IBD who need a voice, and as a nurse practitioner, I want to make a direct impact in the lives of patients by becoming their source of care and a friend to walk alongside them on their journey.

My personal journey with Crohn's Disease began when I was 17. In January of 2023, I was diagnosed with Crohn's after multiple stays in the hospital and my fair share of endoscopies and testing. On my day of diagnosis, the doctor walked into the hospital room with a massive folder. I soon discovered that the folder had over ten brochures from the Crohn's and Colitis Foundation inside of it, and I spent the next hour reading every word and learning everything I possibly could about my disease. From that day on, I knew I wanted to be a part of the Crohn's and Colitis Foundation because on my worst day, it was my only source of knowledge and hope. I am so excited to be a member of the NCCL and be a part of an amazing team providing resources and hope to patients just like me. 

School: New York University

Major: Dramatic Writing

Hometown: Prince George, Virginia

Kaylaa’ White's journey with inflammatory bowel disease (IBD) has been anything but linear. Diagnosed with ulcerative colitis in May 2020 at seventeen, she tried various treatments, she ultimately underwent a three-step IPAA/J-pouch surgery - only for complications to turn three surgeries into six. Now living with Crohn's disease and a permanent ileostomy, Kaylaa' has transformed her experience into a powerful source of advocacy and storytelling.

Throughout her journey, she has faced medical trauma, the minimization of her symptoms, and the harsh reality of misinformation surrounding IBD. As a member of the Crohn's & Colitis Foundation's National Council of College Leaders, & D.M.V. Board of Directors, she is committed to helping others navigate these same challenges while promoting diversity and inclusion in the IBD community.

A writer and creative at heart, Kaylaa' is currently pursuing a BFA in Dramatic Writing at NYU's Tisch School of the Arts. She published her first poetry book "All The Things I Never Said" during her senior year of high school. Kaylaa' uses her platform to foster meaningful conversations about chronic illness, resilience, and representation, creating spaces that educate, empower, and drive connection. When she's not writing, you can find her curating playlists, collecting vinyl records, or getting lost in a book. Instagram, YouTube, and TikTok @wildflouwir

School: University of California Berkeley

Major: Molecular and Cell Biology and Business

Hometown: Sherborn, Massachusetts

I was diagnosed with ulcerative colitis in 2016 when I was 12 years old. My interest in biology stems from my experiences of living with a chronic illness and my desire to conduct research and make a difference in the realm of IBD, searching for insight into my own disease and others. There is much unknown about the disease, especially in pediatrics, and which possible treatments are the most effective and available. I have yet to find a combination of therapeutics that would work for me, even after seven years, and I know that my experience is not uncommon either. It is the frustrations and challenges that I have faced as a result of IBD that motivate me to tackle these issues for future generations. As a patient, I have become a student of the human body in relation to my illness and have participated in fundraising efforts to fund research into my disease.

In addition, since my diagnosis, I have been heavily involved in Camp Oasis, a summer camp for children with inflammatory bowel disease, first as a camper and now as a leader. It was surprising to me how fast campers, who had never met each other before, became comfortable talking about the most intimate aspects of their lives. The community built around the shared experience of living with an invisible chronic illness was vibrant, allowing its members to feel like normal kids. Being in the presence of people who can fully empathize with you and understand what you go through makes you feel lighter and as if there is a weight lifted off your shoulders. I always aim to make individuals feel as comfortable as possible and hope to foster a culture of kindness and respect in every space I am in. Also, my involvement in this community provided me with the strength and support to cope with the realities of my disease.

I am honored to be a part of NCCL and excited to work alongside the inspiring student leaders to make an impact and advocate for those like me.

School: University of South Carolina

Major: Anthropology with Minor in History

Hometown: Victor, New York

I was diagnosed with Crohn's disease at 5 years old and have been in remission since I was around 6. It is hard to remember life without Crohn's, and I currently manage symptoms through medications. Since being in college, my view of IBD has really changed because I never realized how much my symptoms would affect my social life.

I have really found a lot of things in the past year that have helped my mental health because my symptoms increase a lot when I am stressed or anxious, it's easy to find me doing yoga or going for a walk! Realizing the impact IBD has had in my life has made me very motivated to help others find a community with similar experiences.

School: Montana State University

Major: Nursing

Hometown: Flagstaff, Arizona

I was diagnosed with Crohn’s disease at age 5. Over the almost 18 years of my illness, I have learned to embrace the ups and downs of life with IBD. I started a biologic at age 6 and had my first bowel resection surgery in 3rd grade. I continued to pursue outdoor adventures and sports while switching between various biologics and steroid/antibiotic stints. I ended up flaring during my senior year of high school and needed a second bowel resection surgery weeks before I started college. Unfortunately, a big flare up and the development of esophageal Crohn’s disease paired with an abscess/fistula and C-diff forced me to drop out of college after my first semester. I spent weeks in the hospital and was on TPN for 4 months to heal and gain back the 45 lbs I had lost.

Missing out on the rest of my freshman year was hard, but I gained valuable first hand experience on navigating college life and accommodations amidst a flare. I’m currently back at school doing well on dual drug therapy, and am looking forward to entering nursing school Spring 2025! Having an invisible illness makes it sometimes feel easier to hide behind adventures and smiles rather than showing the reality of how sick I often feel behind the scenes. The countless infusions, scopes, preps, injections, failed medications, MRIs, CT scans, blood thinner shots, and months of steroid cheeks add up. I’ve learned that it is a balance of doing things that feed your soul and taking care of your body. I am so thankful for my amazing medical team and family, and for the dedication of science. I am excited to serve on the NCCL to share both a positive outlook as well as the hard moments of living with IBD, letting other young people know they are not alone.

School: University of the Pacific

Major: Computer Engineering

Hometown: Long Island, New York

I was diagnosed with Ulcerative Colitis when I was 16 years old but had been showing symptoms since I was 5 years old. While I have not yet achieved remission, I am hopeful that it is in my near future. I currently receive infusions every 7 weeks and take daily medication to help manage my disease. I have struggled a lot mentally with IBD, but have been helped by Camp Oasis, connections I’ve made through NCCL, and the foundation's support groups. Camp Oasis is something I look forward to all year! I was once an LIT and am now a Cabin Counselor. While camp is only one week out of the year, the family I have created there is constant.

My journey has had highs and lows, but it has only made me stronger in the long run. IBD has allowed me to develop my passion for advocacy and education, especially in the undiagnosed community. I love meeting with legislators during Day on the Hill as I believe having legislation to protect IBD patients is one of the most important things to advocate for. Aside from legislative advocacy, I was also a Mission Moment Speaker for a donor event with the Long Island Chapter. I was able to share my story and how the foundation has helped me throughout my journey with so many people. Being able to see the immediate response at this event made me feel like all the education, advocacy, and fundraising work I do is truly working.

School: Indiana University Bloomington

Major: Economic Consulting / Business Analytics with Minor in Psychology

Hometown: Valparaiso, Indiana

I was first diagnosed with Ulcerative Colitis in December 2022 during my freshman year of college. Juggling emerging symptoms, countless phone calls, and numerous lab tests during my first ever college finals week was not an experience I would recommend to others! Looking back now over a year later, I am proud to say that I am in medical remission. After trying a variety of medications and watching my symptoms fluctuate, I am grateful to have found a biologic medication that worked for me despite all of the struggles I faced to reach this point. My experiences with UC have taught me a work ethic and level of compassion that I believe only an IBD could ever instill in me. When facing a chronic illness, you realize quickly that so many people are dealing with hidden problems that you may never know.

I was driven to join the NCCL to help those battling an IBD feel represented and have access to resources they need to succeed. I am especially keen to promote initiatives for those in marginalized communities, such as those with mental health conditions and the LGBT+ community, who may have a different relationship with their IBD. I am so excited to learn from more experienced advocates and have opportunities to grow. Meeting others who can relate to my journey with UC is one of the most rewarding pieces of having an IBD, so being able to not only expand this community through the NCCL but also share resources and advocate for patients seeking a community is a once in a lifetime opportunity.

School: University of Wisconsin - Madison

Major: Global Health & Pre-Med

Hometown: Whitewater, Wisconsin

I was diagnosed with Crohn's Disease after a surprise trip to the hospital right before my senior year of high school in 2021. I thought I had appendicitis, but unbeknownst to me, I had three perforations in my small intestine alongside a nasty septic infection. Thankfully, I was able to have an emergency bowel resection, and all the nasty bits got removed. Over the next 2 years, there would be lots of ups and downs, a surprise 20th birthday trip to the hospital, and lots of doctors visits. Thankfully, I am much healthier now and I'm able to do most of the things I could before.

Overall, my experience with IBD has ultimately been a positive one. Learning to live with IBD has taught me a great deal about myself, has opened my life up to new paths, caused me to rethink my place in this world, and inspired me to improve other areas of my health. Before my diagnosis, the medical field was not at all on my radar as a potential career field or area of service. But after spending days in the hospital, countless hours in the doctor's office, getting my blood drawn, or receiving an infusion in the infusion center, I realized the importance and beauty of all medical professions.

IBD also made me more empathetic for others with chronic and lifelong illnesses and encouraged me to reflect on how I wanted my actions to affect others. This, along with the fact that I was so inspired by the care that I received, and increasingly curious about how the body functions, inspired me to pursue a career in the medical field so that I would one day be able to serve patients and families who are also dealing with IBD.

School: University of Pennsylvania

Major: Politics, Philosophy, and Economics

Hometown: New York, New York

For years I have witnessed my Mom’s struggle with Crohn’s disease searching for a way to help her and one day find a cure. I began in 2015 by participating in Take Steps walks and joining a Crohn’s and Colitis teen group to think of ways to raise awareness in high schools across New York City. As my Mom struggled to find medication that was right for her, going in and out of hospitals for treatment, I became determined to increase my involvement. By the time I started high school I created a non-profit sock company called Socks For Change, where all the profits would be donated towards research. The use of colorful designs and branded ‘Take Steps’ socks were meant to spark discussion and raise awareness.

I also had the chance to approach advocacy from a legislative side, lobbying on Capitol Hill for the Safe Step Act and Medical Nutrition Equity Act. Speaking with other patients and lobbyists inspired me to continue my advocacy as a caregiver. I could relate many of their stories to the struggles I witnessed my Mom go through, and heard of some that were even worse. I am excited to continue to tackle raising awareness at Penn and creating a better future for patients like my mom as a member of the NCCL.

School: University of Washington

Major: Biochemistry and Molecular, Cellular, and Developmental Biology

Hometown: Maple Valley, Washington

I have always enjoyed science, but my drive to pursue a life in research has undoubtedly come from my experience with Crohn’s Disease.

From my diagnosis in 2017, I have bounced around many different medications and treatment plans. Some worked, and others quickly failed. Beyond my family, I have found support through the foundation, as it has allowed me to meet others with Crohn’s or Ulcerative Colitis. They all share my same experience with disease—it is unpredictable, sneaky, and frustrating. There is still much that is unknown about IBD, particularly how the disease pathology works in each patient. The more we learn, the more information we can use to treat each individual with specificity, and the better their quality of care will be.

My goal is to become part of the team of scientists working to better understand this disease so we can more effectively treat patients and help them feel confident in their ability to live life fully, even with IBD. I also know from personal experience that the clinical information to patient pipeline is sometimes challenging to navigate, with lots of specific terminology and broad strokes but no real plan for how to get through each day.

I am excited to join the NCCL to help be a source of tangible, useful information for students, like me, who are navigating life with an autoimmune disease. The community I have found in my friends with IBD has been a source of joy for me since my diagnosis, and I am grateful to have the opportunity to help build that community further through the platform of the NCCL.

School: Miami University

Major: Business - Human Capital, Management, and Leadership

Hometown: North Canton, Ohio

I was diagnosed with Crohn’s Disease in second grade. Before my diagnosis, I stopped growing, could not eat, and had near-constant stomach pain. I endured about 4 months of testing before being diagnosed with Crohn’s disease. Shortly after my diagnosis, I went to Camp Oasis. At Oasis I made many friends and a community of IBD warriors. I also used many Crohn’s and Colitis Foundation resources to learn more about Crohn's Disease and treatments for the disease. I found, with the help of my Gastroenterologist, that a gluten-free diet combined with an autoimmune suppressant and many vitamins helped reduce my symptoms.

I was so grateful for the Crohn’s and Colitis Foundation that my 3 best friends and I started a fundraising team for Take Steps. We have continued to fundraise every year since. The Take Steps event has further expanded my IBD warrior community. I have also participated in state and federal level Day on the Hill events to lobby Congress for crucial legislation for the IBD community.

The Crohn’s and Colitis Foundation has inspired me to pursue a career in nonprofit business and has grown my passion for helping others. I am also passionate about hockey, mountain biking, hiking, reading, and musical theater. I am so excited to be a member of the NCCL and hope to inspire others to build communities for support and empowerment.

School: Valdosta State University

Major: Sociology & Anthropology with Minor in Psychology

Hometown: St. Marys, Georgia

I am an Ulcerative Colitis patient and was diagnosed freshly after turning 17, just 2 months into my senior year of high school. This came after 3 months of very sudden, and yet extreme symptoms. I persevered through that year, but had yet to find a treatment that gave me true relief. The following summer, my UC took a turn for the worst, causing me to go fully online for my freshman year of college. After repeated hospitalizations, life threatening deficiencies, multiple blood transfusions, ineffective treatments, and many other completely unmanageable symptoms, I made one of the biggest decisions of my life. On November 7th, 2022 my care team and I made the decision to move forward with a proctocolectomy, potentially to one day be restored. A little over a year later, I am living and loving life with my ostomy. I am back in in-person school, finally having the college and life normalcy that I so desperately longed for.

From all of this, I stand proud of all that I have endured. I have been so heavily shaped by my journey and all that it has taught me. I hope to one day be working in the types of children’s hospitals that are a beacon of light in what at times, was a dark world. I learned to nurture my advocacy skills and put them towards the causes of youth/teen chronic illness, patient advocacy, health equity, IBD awareness, and young ostomate representation. Some of the platforms I have used to spread my causes are Tik Tok and Instagram, where I made awareness and advocacy content, and through Color of Gastrointestinal Illness, a non profit focusing on health equity, and the experiences of people of color with gastrointestinal conditions. I am a member of Sigma Gamma Rho Sorority Inc., which has mission goals including health awareness and leadership development and am also the president and founder of my university’s Disability Advocate Union. If there was a reminder I could give to someone on a similar health journey, it would be to give ourselves grace. When we feel we deserve better than our circumstances, we should give ourselves better, by being our own biggest supporter instead of our worst critic. I’m excited to further my passions within the NCCL.

School: Wake Forest University

Major: Economics with Minor in Engineering

Hometown: Charlotte, North Carolina

I was diagnosed with Crohn's disease when I was ten years old. Throughout my time with Crohn's, I have enjoyed many things like two summers at camp oasis, housing accommodations for school, and meeting great people in the IBD community. Of course there have been some downsides for me just like everyone else but it important to focus on the positive as much as you can. Being diagnosed as a fourth grader was a unique experience and one that made me mature very quickly. Having to explain to my friends in class why I was missing so much school and losing weight and to my surprise they were all understanding. I am honored and excited to be a part of this council to bring more awareness to Crohn's and Colitis with a group of people that have as much if not more passion than I do.

School: Creighton University

Major: Chemistry Pre-Med with a Minor in English

Hometown: Yankton, South Dakota

I was diagnosed with ulcerative colitis when I was sixteen in August of 2020. Although my symptoms started in early January of that year, the pandemic discouraged me from receiving care. In October of 2020, my family and medical team decided surgery (a total colectomy) was the best option after my medications and infusions failed. I lived with my ileostomy bag for most of my senior year of high school, but, after months of consideration, I decided to pursue a j-pouch. It was a hard decision to make, but I am so grateful I did; my j-pouch provides me with the stability required to pursue my goals!

I found it tricky to navigate my diagnosis, since I lived in a small town. To receive appropriate treatment, my family and I had to travel over 4.5 hours to the Mayo Clinic in Minnesota. Also, there were not any Foundation events that occurred in South Dakota at that time. Without a support group to lean on, I felt like the only person who had ever experienced this. Eventually, I discovered the Take Steps in Lincoln, NE, and I skipped my senior homecoming game to attend! Seeing this community of people like me truly opened my eyes to how much support I really had. Since then, I have attended many more Nebraskan Crohn's and Colitis Foundation events and served as a camp counselor for Camp Oasis last summer.

Inspired by the support the Foundation provided, I founded my own club, Gut Feelings, on Creighton's campus to fundraise, advocate, and volunteer for the Crohn's and Colitis Foundation. It has been so empowering to meet others who have experienced a similar journey! I am so incredibly grateful to have this opportunity to be a part of NCCL. I am so passionate about raising awareness for the Crohn's and Colitis Foundation, and I cannot wait to continue that through NCCL.

School: North Carolina State University

Major: Biochemistry

Hometown: Cary, North Carolina

I was diagnosed with Ulcerative Colitis in June 2020. My symptoms came on around the same time we entered the pandemic. Starting from March 2020, I faced about 3 1/2 months of uncertainty with what was going on within my body. My grandfather also has Ulcerative Colitis but his diagnosis was over 40 years ago, when the only option was surgery, so my family didn’t really know what exactly I was going through.

Due to the family history, I was lucky enough to get diagnosed within the first few appointments. This didn’t make it any easier however. The amount of information that was thrown at me, was overwhelming, we were all in lock down and I felt very isolated. I couldn’t explain what was occurring to my friends, because I feared they wouldn’t understand. The first medication I was placed on worked for about 6 months, during those 6 months I faced extreme denial. I assumed since this medication was working, I was fixed, I was back to being who I was just one year ago. That was not the case. Soon enough, I entered another flare, the medication was no longer working. After a switch of medication, in 4 months I was able to reach some stability once again.

Thanks to my doctor, I was able to feel less alone. I joined my hospital’s IBD patient support group where I was introduced to the Crohn’s and Colitis Foundation. I was amazed to see how many people shared similar experiences and feelings, it made me feel more connected and less alone. My first real involvement with the Foundation was through the NCCL. I’m so thankful for this opportunity because it allowed me to connect with others my age and also be the voice for people who are currently facing the same fears that I did just two years ago.

My diagnosis pushed me to want to pursue a career in research, as a way to give back to those who have done so much to me. It’s not easy going through an IBD diagnosis, especially if you don’t fully understand what’s going on. You may feel isolated and frustrated that you have no one to connect with on this. I’m so grateful to have found this community that makes me feel supported and am grateful for the opportunity to advocate, educate, and raise awareness for IBD. I hope that sharing my story can help others, as the way other’s stories once did for me!