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

Hi everyone! My name is Jacqueline Park, but everyone calls me Jacque. I'm a sophomore at the University of Utah. I'm pursuing Computer Science in hopes of being a part of the data analysis side of medical research, specifically within autoimmune disorders diagnosed in pediatrics. 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, IN

Hi! My name is Becca Knuteson. Currently, I am a freshman at Indiana University majoring in nursing. 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: Vanderbilt University

Major: Biochemistry with Minor in Medicine, Health and Society

Hometown: Lincoln, MA

Hi – I’m Aaron Orgel and I’m currently a sophomore at Vanderbilt University studying biochemistry with a minor in public health. I am following a pre-med track and I am hoping to pursue a career in medicine. I was diagnosed with Crohn’s disease when I was six years old after experiencing intense symptoms that many are all too familiar with: stomach pain, frequent bathroom trips, and a general inability to focus on typical activities of a first grader. In fact, that first year, I missed more than half the school year. After years of trying new medications with hopes of success and succumbing to failure, I finally found the right combination to keep me healthy. I’m happy to say that I’ve been in remission for nearly five years! 

My 13 year struggle with Crohn's has repeatedly taught me that in the physical battle between my stomach and my will, my stomach might win at any given moment, but it is my will that defines me. Today, my battle with Crohn’s is a success story, but I know that some people are not as lucky. I’m excited to be on this board to help promote advocacy, awareness and fundraising, and shed light on the illness and how it affects me and millions of others, with the ultimate goal of one day finding a cure.

School: North Carolina State University

Major: Biochemistry

Hometown: Cary, North Carolina

Hi everyone! My name is Saanvi and I’m a sophomore at NC State University. 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!

School: Stanford University

Major: Comparative Literature & Science, Technology, and Society

Hometown: New York, New York

My name is Divya Mehrish, and I am a student at Stanford University. Fascinated by interdisciplinary studies, I am pursuing a double major in Comparative Literature and Science, Technology, and Society. I was diagnosed with fulminant Ulcerative Colitis in 2015, when I was thirteen years old. Just avoiding a colectomy, I struggled through colonoscopies, trials of various biologics, and extensive hospitalizations. It was then that storytelling became my vessel. Building new universes and characters, I reinterpreted difficult memories from new perspectives. I learned to feel outside of myself.

Creative writing is a form of cathartic communication—it’s a way to tell one’s story. I’ve used writing to teach others about empathy, promote understanding about chronic illness, and reduce stigma. Writing has helped me advocate for myself at school, at home, and in medical settings. My experiences have helped me appreciate that each person faces unique circumstances, struggling in their own way. The connections I have formed with others inspire me to use language with a sensitive heart and to embolden others to be revolutionary with their own words.

To that end, I plan to focus on Medical Humanities. This field draws on the humanities’ creative and intellectual strengths to influence healthcare and day-to-day medical practice by focusing on the humanity behind a patient’s unique experience with illness. I want to revolutionize how medicine engages—physically, emotionally, and spiritually—with patients. My ulcerative colitis has become my platform, my secret weapon—the strength I’ve gained in my journey has made me more confident in my voice and more resilient. But while these experiences contribute to my identity, they do not define me. I’m more than a chronic illness. I’m an individual who grows, learns, and evolves daily.

School: Miami University 

Major: Business- Human Capital, Management, and Leadership

Hometown: North Canton, Ohio

My name Is Johnnie Murphy, I am a freshman at Miami University studying Business- Human Capital, Management, and Leadership.  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: Montana State University

Major: Nursing

Hometown: Flagstaff, Arizona

Hello! My name is Anna Henkenius. I am currently a sophomore in the Honors College at Montana State University studying nursing. I love to be outside skiing, climbing, backpacking, and river-rafting. 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

My name is Anna and I am a third year student at University of the Pacific in Stockton, California, but I’m from New York! I am majoring in Computer Engineering and a Brother in Theta Tau, a Co-Ed Professional Engineering Fraternity. I am also a member of Pacific Legal Scholars which is like an honors version of pre-law. I hope to one day have a career that connects technology and criminal justice. I am involved with both the Long Island and Greater New York Chapter at the Crohn's & Colitis Foundation and am so honored to be a member of the NCCL where I am part of the Advocacy Workgroup.

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

Hi there! My name is Anthony Grisolano, and I am a sophomore at Indiana University Bloomington studying Economic Consulting and Business Analytics with a minor in Psychology. I was first diagnosed with Ulcerative Colitis in December of 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 Pennsylvania

Major: Politics, Philosophy, and Economics

Hometown: New York, New York

My name is Connor Hubbe and I am a freshman at The University of Pennsylvania. 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: Valdosta State University

Major: Sociology & Anthropology with Minor in Psychology

Hometown: St. Marys, Georgia

Hello! My name is Kagan Ellis and I am a 2nd year student at Valdosta State University. My major is Sociology and Anthropology and I will also soon be picking up a minor in psychology. After receiving my Bachelor's degree, I will pursue a Master’s degree in social work. This will all be in hopes of becoming a pediatric medical social worker. Outside of school, I enjoy crocheting, collecting vinyl records, collecting CD kpop albums, and fashion.

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: New York University

Major: Dramatic Writing

Hometown: Prince George, Virginia

Kaylaa’ White is an ulcerative colitis warrior, writer, and creative, always looking for avenues to learn more while creating spaces and advocating for those from underrepresented backgrounds. 
After being diagnosed with ulcerative colitis in May 2020, and trying various medication treatments, she decided to undergo a three-step IPAA/J-pouch surgery. Due to complications, her number of surgeries has increased from three, but she's hoping she'll be able to return to college and continue her studies on campus. 
Since she's been diagnosed she's experienced a wide variety of trauma directly related to ulcerative colitis, a lack of understanding and/or believing that her illness was serious, having her rights as a patient ignored and minimized by providers, and has witnessed the spread and effects of misinformation about IBD. Through the NCCL she is hoping to aid others with navigating these obstacles while promoting diversity in the IBD community. 
She is currently pursuing a BFA in Dramatic Writing at New York University’s Tisch School of The Arts. To follow her work more closely and connect, you can find her on Instagram and TikTok @wildflouwir 

School: Wake Forest University

Major: Economics with Minor in Engineering

Hometown: Charlotte, North Carolina

Hey everybody! I am Luke Berry a sophomore at Wake Forest University majoring in economics and minoring in engineering. 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

Hello, everybody! My name is Maggie Schaefer, and I'm a sophomore at Creighton University in Omaha, NE. Since I have always loved science, it was a no-brainer for me to pursue a chemistry degree on the pre-medicine track. Currently, I want to become a pediatric gastroenterologist. At Creighton, I'm a part of the honors program, theta phi alpha, sigma alpha nu, and, my own club, Gut Feelings.

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: Butler University

Major: Chemistry (Pre-Med)

Hometown: Saint Joseph, Michigan

HI! My name is Nathan Marohn and I am a sophomore at Butler University in Indianapolis, Indiana. I am majoring in Chemistry on a Pre-Medical track with a minor in Biology. This is my second year on the NCCL Board and I am so excited to have the opportunity to share my voice with the IBD world and make a difference! I was diagnosed with Ulcerative Colitis when I was in 6th grade (12 years old). I was on numerous medications and constantly in and out of the hospital. At the start of my freshman year of high school, I had to have surgery due to my body developing antibodies against all of my medications and I was left with no more medication-therapy options. I ended up having my large intestine, appendix, and all but 0.5cm of my rectum removed and I lived with an ileostomy for almost all of high school. Now, I have gotten rid of my ostomy and feel awesome!

This terrible 9 year battle with my Ulcerative Colitis really opened my eyes to how severe a disease like this can be and to what extent it can have on an individual's life both physically and mentally. By joining this board, I feel like I am able to share my story on a much bigger scale and help spread awareness about this disease so that individuals do not have to go through what I had to go through during my teenage years of life. I want to be an advocate for the IBD community as a whole and I am passionate about making change in the IBD world!

School: University of South Carolina

Major: Biology with Minor in Anthropology

Hometown: Victor, New York

My name is Rachael Lanning and I have been a student at the University of South Carolina since Fall 2022. I am an Anthropology major and History minor and am in the Honors College. In the future, I hope to go into museum work! I am from Victor, NY, and my passions include dance, yoga, hiking, and music. I am an on-air DJ and rarely am I not listening to music!
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: University of California Berkeley

Major: Molecular and Cell Biology and Business

Hometown: Sherborn, MA

Hi! My name is Riya Bahadur, and I am a student at the University of California, Berkeley. I am currently pursuing a double major in Molecular and Cell Biology, with an emphasis on Immunology and Molecular Medicine, and Business Administration. 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.