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Below is the current list of National Youth Leadership Council (NCCL) members. To learn more about each of the members, just click on their name to see their brief biography as well as a Q&A about their experiences with the NYLC.
Alex was diagnosed with Crohn’s Disease at age 9. It took 8 years after diagnosis for Alex to find remission. Of those 8, Alex’s worst years were during freshman and sophomore year of high school. Alex missed 20 days of his sophomore year because of his disease, but that did not stop him - an Eagle Scout, a black belt in Karate, and an avid member of the High School Marching Band (Baritone).
A defining factor of Alex’s fight with IBD has been the period of time he spent NOT talking about his disease. At diagnosis, Alex was one of those kids who sat in the classroom invisible to his peers and he liked that. A diagnosis of Crohn’s Disease threatened that invisibility and it took him five years before he accepted his disease. However, with school absences, multiple surgeries, TPN, feeding tubes, an ileostomy, he could no longer hide.
But that seems like long forgotten history as Alex has gone from wanting to be invisible to being involved in everything he can as an advocate for others with the disease. Alex volunteers with the ImproveCareNow network; is a member of the Cincinnati Children’s Hospital Patient Advisory Council; a member of the CCFA Cincinnati IBD Education Day planning committee; a quest speaker at Kick for Crohn’s and other local CCFA Chapter fundraising events; the captain of his Takesteps team raising over $15,000 in the past 5 years; a councilor in training at Camp Oasis; and an avid mentor for other local kids with IBD. Alex is grateful to share his experiences in the hope that others can be better prepared to open up about the disease like he has.
Hello! My name is Amy Dickeson and I am currently a junior at UC Berkeley studying Metabolic Biology in hopes of pursuing a career in medicine. I am ecstatic to have been on the council for two years now; it is incredibly fulfilling to be able to make an impact on students that have been affected by IBD, like me.
I was diagnosed with Crohn’s the summer before my sophomore year of high school, though it took years of pain and suffering before I finally got answers. In 8th grade, I was misdiagnosed with an eating disorder after my weight and appetite began to severely drop, and I was failing to thrive. After a crippling year and a half of living with the pain and symptoms of an untreated disease, we turned to GI for answers, and I was finally diagnosed with Crohn’s disease. Fortunately, my fantastic team of GI specialists were able to control my disease with oral medications, and I am proud to say I have been in remission ever since! Training my body to function again was a long and arduous process, but my whole experience taught me so much about myself and my goals in life, and I wouldn’t trade these lessons for anything. I feel fortunate to have gained so much from my journey with Crohn’s, and I hope to help others to do the same!
It took me years to be able to talk about my disease, and I had never met anyone going through what I was dealing with. When I came to Berkeley, however, I kept stumbling upon other IBD patients and I began to build up a small support system. It was so meaningful and fulfilling to meet others just like me; knowing that I wasn’t in this alone was unbelievably powerful. I felt a sense of urgency to talk about it and be an advocate for my disease. I found the NCCL and immediately knew it was something I wanted and needed to do for myself. Words cannot describe how grateful I am to be working for such a fantastic organization and to have the ability to help college aged patients with IBD. I’m looking forward to seeing where this opportunity takes me and I’m excited for a fantastic year full of new opportunities and programs!
My name is Brian Ward. I am currently 19 and a sophomore at Gonzaga University in Spokane, Washington and am studying Biology on the pre-medicine track.
Growing up in Tacoma, Washington, I enjoyed an active lifestyle. In the summer of 2008, however, I couldn't seem to find my way away from the restroom. I was blessed with a quick diagnosis and was immediately put on steroids. After a few years, my doctors recognised malnutrition and after deliberation, transitioned me to a biologic. While my medical condition improved, it was still difficult for me to cope. Through CCFA, however, I was able to go to Camp Oasis, take part in Take Steps, and get to know many inspiring people. Since then, I’ve gone from being a camper to a counselor for Camp Oasis, and my Take Steps team has gone from four people to more than forty, and now, I am lucky enough to be a part of CCFA’s NCCL!
I am currently on remission and doing well, but I still am passionate about Crohn’s and Colitis. IBD affects too many people and I am proud to work with CCFA to help patient care, educate people about my disease, and to ultimately find a cure.
I am a junior at Harvard University, concentrating in human regenerative and developmental biology pursuing a career in medicine/business, and participating in stem cell research in hopes of finding a cure for Crohn’s. On my campus I am involved with the Pre-medical Society and the Athlete Medical Mentorship Program. I also participate in Women in Business, club tennis, club volleyball, Alpha Phi sorority, and writing gluten-free articles for the Crimson Crave newspaper. I am so excited to be an advocate of CCFA and NCCL on my campus.
I was diagnosed with Crohn’s disease when I was ten years old after living with months of severe cramps and pain. At first, I was very scared. I had never heard of the disease, and I was worried about how it would affect my academic, athletic, and social life. With the help of my gastroenterologist, I was put in contact with my local CCFA chapter. My entire family has become very involved with CCFA at the local and national level. My father is on the national board as well as starting a local chapter of which he is currently president. We have fundraised through sponsoring local celebrity golf tournaments, deep-sea fishing tournaments, and corporate get togethers. Personally, I have organized teams for Take Steps Orlando since its inception there three years ago. I have managed a Team Challenge website for my mother who has run in 6 half-marathons and done one triathalon. I have attended my local conferences to learn more about new advances in treatments for IBD. I have met incredibly inspiring people at these events and am excited to see the support and awareness that can be generated to find a cure.
Throughout my journey with Crohn’s, I have been on many different medications. I have had several flares, one occurring at the end of my first freshman semester that led to a bowel resection and the removal of 10 inches of my colon. Although I have never fully been in remission, I have continued to participate in sports at a high level, excel in school, and find time to have fun doing things I enjoy. Crohn’s disease has not defined me: it is a part of me. It has given me the opportunity to be a mentor to others with IBD around me. I am extremely thankful that I am a member of the NCCL and that I get to work with an incredible group of people who understand me and are as passionate about finding a cure as I am.
Hi! My name is Emily Morgan and I am a senior at the University of North Carolina at Chapel Hill. I am originally from Shelby, North Carolina and have an amazing set of parents and two younger brothers. In school, I participate on the Club Swim Team and enjoy being an active member of the Carolina’s CCFA Chapter. Being a member of the CCFA and now the NCCL has introduced me to a wonderful community of people and friends. It’s so amazing to be part of a group of people working together to find a cure. If you have IBD, don’t let it control your life.
I was diagnosed with Ulcerative Colitis in the eighth grade. Over the span of two years I tried a total of five different medicines- all of them failing. I basically lived on prednisone and finally I had had enough. My family and I consulted with a surgeon second semester of tenth and grade and next thing I knew, I had my colon removed the following summer. Recovery was tough, but I am now in remission and living my life about as normal as possible! The support I received was so encouraging. I am now determined to give back to the community who helped me so much during the most trying time of my life thus far.
Given this opportunity, I hope to build the CCFA community in the Carolinas by raising awareness and recruiting more involvement among students, friends, and family. Having a strong support system is part of the key to battling your disease. Living with IBD doesn't make a person any different from anyone else. Your disease doesn't "own" you. So go out and get involved today!
Hello, my name is Emily Rund and I am a double major at Virginia Commonwealth University’s School of the Arts in Richmond Virginia. I am currently a junior in the Photography and Film department with a concentration in film, as well as in the Kinetic Imaging department. I grew up in Carroll County Maryland.
I was diagnosed with Crohn’s Disease at age four. Through trial and error I attempted most of the drugs on the market and eventually found a combination that has helped me live my life with minor gut issues. I have learned to look at the positives in my situation, the most important being my amazing support system. When I was nine years old I attended Camp Oasis as a camper and have gone every year since, now attending as a counselor. I have met my very best friends there and found my home away from home where I am comfortable to be myself with others just like me.
Through my involvement with Camp Oasis I have seen my close friends and campers living with IBD as best as they can. There are good days and bad days, but many of us have gone through more than any one person should endure. I am passionate about raising awareness for IBD, which I personally have worked on through making art but can now pursue further and more in depth as a council member. I am very excited to help find a cure!
I am a junior at Muhlenberg College, double majoring in Theatre and Media Communications. On campus, I am the Show Choir's Music Director and Vice President, the Office of Information Technology's Resident Technician, Catholic Campus Ministry's Public Relations Officer, and work as the Theatre Department's Student Master Carpenter. In addition, I mentor my high school's FIRST Robotics Team. I grew up in Blue Bell, PA, and am a proud member of the Philadelphia/Delaware Valley Chapter of the CCFA.
With the help of the CCFA, I have thrived through the most difficult period of my life. At age ten, I began to experience symptoms of extreme nausea, fatigue, and lost 20 pounds in a matter of weeks. The answer, Crohn’s Disease, came about 6 months later following a battery of tests and hospital visits.
One of my first adventures following the diagnosis was CCFA’s Camp Oasis. From my first day at camp, I realized it was a place to spend time without worry, and an opportunity to make meaningful, lasting friendships with people I would have never met otherwise. Summer 2015 was my 10th summer at Camp Oasis. It is an amazing experience to return again as a counselor. My goal is to be able to give back to others what Camp Oasis and the CCFA have given me. I also captain Team Tiffany for the Take Steps Walk in order to encourage others to fight for a cure.
During my time with the CCFA, I have become an advocate for adults and children living with Crohn’s and UC, serving as the 2007 Youth Ambassador, the 2013 Honored Hero, and now as a member of the College Council. Having an outlet to help deal with a potentially debilitating disease while serving others is a tremendous honor. The CCFA has been there for me since my diagnosis, helping me along the path of turning a challenge into an opportunity.
I love sharing my story and speaking with others so please reach out if you have any questions or just want to talk!
I am a sophomore at New York University, majoring in biology and minoring in studio art. While I loved growing up by the water in Westport, Connecticut, I love living and studying in New York City even more—from the wacky people and the diverse areas to the amazing opportunities, NYC is definitely the place for me! A big part of why I chose to study in NYC is because I am very interested in diversity and how everyone person on Earth is unique. It was this interest when I was in high school that lead me to my passion for evolutionary genetics, as well as understanding why some people get sick and others do not—especially in the context of autoimmune diseases like Crohn’s and Colitis. After being diagnosed with Crohn’s Disease when I was 11, I clung steadfast to the idea that “ignorance is bliss” and made every effort possible to avoid talking about and understanding my disease. However, getting involved with the CCFA helped me grow out of this mentality, and changed my life in so many other amazing ways. CCFA was my first step in tying together my passion for biology and my disease. Now, I am involved with genetic research that focuses on the environmental factors that can induce diseases like Crohn’s and Colitis, and hope to one day conduct my own research on developing effective treatments for these conditions. Crohn’s sucks—there’s no doubt about it—but it has shaped who I am today, and led me to the amazing organization that is the CCFA. I am so excited to be a part of NCCL now, and can’t wait to make a difference both within the Crohn’s and Colitis community and in the rest of the world.
My name is Jack and I am a sophomore at the University of Denver. I am majoring in Strategic Communications with a Marketing minor. I am a Brother of Theta Chi Fraternity.
Growing up, I was very healthy and often participated in two sports in which the seasons overlapped. In high school I participated in soccer, hockey and tennis. I was also involved with Campus Ministry. I am the youngest of three siblings and originally from Minnesota.
I was diagnosed with Ulcerative Colitis at the age of 15 during my sophomore year of high school. I ended up becoming very sick during hockey tryouts and failed to make the team. It took me awhile to become comfortable talking about my UC but have come to realize that it has made me a stronger person. I know by sharing my experience with others it may help them understand that they are not alone and that with the proper support and medication they too can lead a normal life. Personally, I have found relief in Remicade after having tried many different kinds of oral medications.
I interned at the Minnesota Dakota Chapter during the summer of 2014. The level of enthusiasm and passion for CCFA in that office is contiguous. They were the ones who introduced and encouraged me to apply to the council. I am very excited to bring CCFA to my campus and raise more awareness.
Hi, my name is Kalee Eichelberger and I’m a Junior at the University of Florida. I am studying Biology as a premedical student and conduct research in a pediatric gastroenterology lab investigating different pathways scientist can utilize for IBD treatment. I have been very influenced by the role medicine and health professionals have played in my life. The relationships I have formed at my school’s Disability Resource Center have inspired my minor in Disabilities in Society and the role diet has played in my IBD health lead me to also minor in Nutrition.
Receiving a diagnosis for me was very challenging. I started having gastrointestinal problems from about the age of middle school, was scoped, and diagnosed with Celiac Disease. From then on all my GI problems were attributed to the Celiac sprue I had developed throughout the years. As time went on I was getting sicker and I was diagnosed with juvenile rheumatoid arthritis, vasculitis, and POTS. Treatment after treatment was failing and I started having the worse stomach pains I had ever experienced throughout high school. My junior year I was finally diagnosed with Crohn’s Disease after another flare put me in the hospital.
Achieving remission has been really challenging and painful but joining a CCFA support group helped me become more open about my disease and helped me connect with others affected by IBD. Through the support group I was able to participate in Take Steps and find out about the NCCL. Because it took me so long to receive the diagnosis and care I needed, advocacy and education is something I am very passionate about. I now co-facilitate the Gainesville chapter support group and help organize Take Steps in Gainesville. With CCFA’s support, I’ve been able to establish a student group on campus and help push further for a cure.
Hi my name is Kira Nathan and I am currently a third year at Oberlin College. At Oberlin I plan to major in neuroscience with a minor in politics. I grew up in Niskayuna, NY with my parents and older sister, though my parents recently moved south to Asheville, NC.
I was diagnosed with Crohn’s disease when I was 10 years old and luckily found medication early on that kept my disease under control. While my Crohn’s did not have a significant impact on my day to day I did not like to admit to friends or teachers that I was living with this disease. It wasn’t until I began to be involved with Get Your Guts in Gear, another organization that raises money and awareness for Crohn’s and Colitis that I felt comfortable talking about my Crohn’s with people other than my doctor and parents. When I attended Camp Oasis a few summers ago I was in awe of the community that had been created. I had never been in a space with people my age or younger who were honest and open about their disease.
When I came home from Camp Oasis I felt inspired to be more open about my Crohn’s disease. It is a hard disease to talk about but I have found that safe spaces to share experiences are essential to living with this disease, or any chronic disease. I want to make it easier for others to talk about their own experiences so they can also accept their disease as a part of their life. I hope to continue this with the NCCL and work on projects that will make it easier for kids and teenagers to talk about their experiences and work towards a cure.
My name is Missy O’Doherty, and I am currently a junior at the University of Denver. I grew up in San Diego, California, with two amazing parents and a wonderful sister, where I discovered my love for music and the practice of medicine. I am currently studying biological sciences and music, with a dream of going to medical school.
I was diagnosed with Ulcerative Colitis the summer after I turned 11 years old. For the first three years, I went through almost every medication that could be given to a child for IBD with no relief. I was in an out of the hospital every other month during this time. Finally by my Freshmen year of high school, I was put on an infusion that finally put me into a remission. It was the first time I felt normal since my diagnosis, and kept me healthy all throughout high school. Although I have been sick since then, I have been lucky enough to go to college, compete in triathlons, and help CCFA raise awareness and much needed funds for Crohn’s and Colitis since. It’s a daily struggle, but the support you gain from CCFA and meeting others with this disease is astounding. I am lucky to have found CCFA and met so many inspiring and encouraging individuals through all the amazing programs they have offered me.
It has certainly been a difficult almost 10 years, but these past years have been an incredible journey. I have grown and learned so much despite the adversity I have faced as a result of my diagnosis and am thankful that this disease has helped me grow into this strong and successful individual. I look forward to making a difference through the National Council of College Leaders, for the 1.6 million Americans and many many college students living with these incurable illnesses everyday, who may not be as lucky as myself. I also hope to become an integral part of what the CCFA mission is about, and be a great role model by sharing it with all those whom struggle daily. Support and a great attitude is really what its all about.
I am a junior at the University of Missouri- Columbia. I am the middle child in my family with one older and one younger sister.
I was diagnosed with Crohn’s Disease when I was ten. At first my disease responded well to oral medications and I was growing well and in remission for several years. During my last years of high school that changed. I recently had an intestinal resection and I am doing pretty well with the help of Humira.
When I was first diagnosed no one in my family had even heard of Crohn’s Disease. Man, we have come a long way since then! My first experience with anyone else who had Crohn’s Disease was through CCFA. Right away we became involved with the Take Steps walks every year. But then something changed that fueled my interest in helping advance research and awareness for Crohn’s Disease...my younger sister, Anabel, was also diagnosed with severe Crohn’s Disease.
I am no longer uncomfortable speaking about my disease, the more people know the more progress we can make. I participate in CCFA’s events, camps and fundraisers and have organized two successful 5K’s in the small town that I am from. When I first learned of the council a couple years ago I knew I wanted to be involved and now here I am. To set an example for my sister and any other young people that I can affect I will continue to live by the motto that says ‘I have Crohns’, Crohn’s doesn’t have me.
Hi, I’m Reid! I was born and raised in Dallas, Texas and am currently a fourth-year biology major at the University of Virginia and I am hoping to go to medical school next year. I am involved in a number of organizations on Grounds in addition to being a proud member of the National Council of College Leaders.
When I was twelve, my pediatrician saw that I was very underweight and had not grown for several years, he ran a few other tests and I was ultimately diagnosed with Crohn’s disease. Over the next year or so, I went through a barrage of treatments before I was put on Humira and Methotrexate, which have thankfully kept me in remission ever since. I have been lucky enough to have very supportive friends and family by my side the entire time, including my father, who is a gastroenterologist. Since my diagnosis, I have participated in Take Steps walks and helped the North Texas chapter of CCFA organize fundraising dinners, plus I have been a counselor at Texas’s Camp Oasis. Spending time at CCFA events and being on the council have been a amazing experiences—not only have I worked to find a cure for my disease, but I’ve also met people who have gone through much of what I have and bonded with them by sharing my story. In addition, I have been part of a research project on inflammation in IBD at UT Southwestern Medical School and have done some clinical volunteer work at school.
Going to college presented new challenges, like getting my medicine shipped to me and dealing with the stress of living on my own and taking college coursework. I got used to these things over time and have used my experiences to help others in similar situations get through what I had to go through. Through my work on the council, I’ve been able to help many people at UVA and beyond this way. I hope to continue my involvement after college and into my medical career.
My name is Ty Redler and I currently attend the University of Florida. Before I was diagnosed with Crohn's Disease in 2008 I was a very active kid, I had a scholarship to play soccer in high school and I was also one of the top jazz baritone sax players in the state of Florida. Nine months prior to my diagnosis started me on the path that I did not know where it was going to go. On August 28, 2008 my life as I knew it was going to be changed for the rest of my life but I couldn't fathom this.
The day after I was diagnosed I started to research how I could possibly help these horrible diseases. I found CCFA and asked them how I could help. A few months later when I was healthy enough to leave my house they asked me to be the honored hero for take steps and team challenge and give speeches to recruit people for the events. After giving the speeches I met a girl who told me that I had to go to Camp Oasis.
When I got to college I knew I needed to help make an impact in the world so I started to look a position in a lab to join and perform genetic research. After starting in my first lab I was very persistent with questions, asking to take part of some experiments which in turn allowed me to take on my own projects and network with other researchers. Now after doing research for 4 years I can say that research is the building blocks to discovery, with discovery we will find a cure in the near future. After joining my lab I heard about the National Council of Collegiate leaders to help be an advocate for college students and patients across America so they can have equal rights to healthcare and to not be discriminated in any sense.
Although in August of 2008 my life was completely changed, it was changed in a positive way. I learned that we all are different and even though I have a condition this condition will not control my life; I will.