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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.
I am currently a senior at UConn in the NEAG School of Education studying Special Education, and am just finishing up my second year as a member of the Council.
I came across CCFA my freshman year of college, and it has totally changed my life since then. When I was in fifth grade, my dad became extremely sick and was diagnosed with Crohn's Disease, which really affected my family. But then, in my senior year of high school, I received the same diagnosis and was completely devastated. Within the following 6 months, I had an ileocecectomy, my younger sister Sarah was diagnosed, and then my youngest sister Jane was diagnosed. Just like that, four of the five members of my family had received the same diagnosis of Crohn's Disease.
When I went to college in the spring, I was still uncomfortable with my IBD and didn't really know how to deal with it, especially away from home. It wasn't until the middle of my freshman year that I found CCFA and signed up for Team Challenge in Virginia. I had never run before, and never really met anybody with Crohn's or Colitis outside of my family. I could never have anticipated the support, love and relationships that came from those long training runs and our adventure of running 13.1 miles together on race day. This was the turning point for me, because it was after this that I found the National Council of College Leaders and met some of the greatest people I know.
Crohn's Disease suddenly started bringing me opportunities, and CCFA has been the door to those experiences. I am now a counselor at Camp Oasis, had the opportunity to speak at Day on the Hill in Washington DC, volunteer at any CCFA event that I can find, and cherish moments with the good friends I have made through my diagnosis. Meeting people who "get it" and have the same passion of working toward a cure as I do is the best part of being involved with CCFA!
Amelia Brause is a senior at the University of Pittsburgh. Diagnosed with Crohn's Disease at nine years old, Amelia immediately became a member of CCFA in her home state of New Jersey. She spent her summers attending Camp Oasis and is now a counselor there. Amelia currently serves as the co-chair of CCFA's National Council of Collegiate Leaders. In addition, she is a member of CCFA's Stakeholder Review committee. As a student at Pitt, Amelia served as a Board Member for Student Government Board and also spent two years as the Co-Chair for American Cancer Society's Relay for Life. Amelia will be spending the summer of 2014 as an intern for the pharmaceutical company, AbbVie. Following graduation Amelia plans on getting her masters in Public Health and pursuing a career as a Physician's Assistant.
My name is Brandon Gillman and I am currently a senior at Washington University in St. Louis. I grew up and went to high school in Livingston, New Jersey and now I live in Boca Raton, FL. I am studying systems engineering, with a minor in operations and supply chain management and am a brother in the Sigma Phi Epsilon fraternity.
I actually took a year off between high school and college in my battle with Crohn’s Disease, a year in which I had multiple surgeries, spent countless days in the hospital, and saw my weight drop by more than 40 pounds. Now, I am back at school and feeling as healthy as ever, although I do take my fair share of pills.
I was diagnosed with Crohn’s twelve years ago at the age of ten. It has become a really important part of my life and I truly believe it has helped shape the person that I am today. I embrace having Crohn's Disease. I love when people ask me about it and I am completely open about telling them my story. I just want to get the word out about these terrible diseases! I went to Camp Oasis as a camper and am now a counselor, I have run a half marathon as a part of the Team Challenge program, and I speak at CCFA events for my local chapter. I am doing everything I can to help find a cure and am looking forward to where the NCCL will take me!
I am a senior at Emory University double majoring in Chemistry and Psychology and getting ready to apply for medical school. At Emory, I am the current Chief of Operations for Emory EMS, a Chemistry TA, a part of the sailing team, and a member of the NCCL.
Once I was diagnosed with Crohn's disease in seventh grade I quickly became involved with my local CCFA chapter in Philadelphia. Since then, CCFA has introduced me to so many amazing people and provided me with countless opportunities to help work towards a cure. I have been involved with the Philadelphia Take Steps walk for the past five years and attended various other events both at home in Philadelphia as well as at school with the Georgia chapter. During my freshman year, I applied for the NCCL and was lucky enough to be selected to be a member of the council. My time so far on the council has been an incredible and rewarding experience, and has allowed me meet other students who are going through similar situations as well as be a part of various projects to spread awareness and provide support for other students suffering from this disease.
Thankfully, I have been in remission for a few years now, so my disease does not impact my everyday life. However, I still remember what the daily struggles were like. Living with IBD is difficult, and I have learned that honesty and openness, and trusting friends and family, will help me live with this disease. I will continue to volunteer with CCFA to help spread awareness, raise money, and ultimately work toward finding a cure.
I am a sophomore 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 am involved with Women and Business, Club tennis, Varsity volleyball, and writing gluten-free articles for the Crimson Crave. 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 4 half-marathons raising over $20,000. 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 junior 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 run 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. My diagnosis has led to my career choice. I hope to someday become a Pediatric Physicians Assistant, possibly specializing in gastroenterology.
Given this opportunity, I hope to build the CCFA community in the Carolinas by raising awareness and recruiting more involvement among students and 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 than anyone else. Your disease doesn’t “own” you. So go out and get involved today!
I am a sophomore at Muhlenberg College, double majoring in Theatre and Media Communications. On campus, I am a member of Muhlenberg's Theatre and Dance Associations, Jazz Singers, Show Choir, am the Resident Technician of the Office of Information Technology, and serve as the Public Relations Officer for Catholic Campus Ministry. 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 2014 was my 8th summer at Camp Oasis. It was an amazing experience since I was able to return 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.
Holly was diagnosed with Crohn’s disease at age 10. Middle school and high school were difficult but Holly never let it stop her. Her freshman year of college she had a subtotal colectomy and has had an ileostomy bag ever since and she says it was one of the best decisions she ever made. Having an ileostomy has given her the freedom to move forward and help others in similar circumstances.
Having Crohn’s has seemed to open more doors than it has closed for Holly. She has fundraised over $8,000 with CCFA’s Take Steps, attended and been a volunteer counselor at Camp Oasis, and went on a trip with IDEAS (Intestinal Disease Education and Awareness Society) for a four day hike along the Inca Trail in Peru to help spread awareness about IBD. Holly plans to continue advocating for other with IBD with the CCFA’s NCCL as well as by pursuing a career as a Child Life Specialist after she graduates. Holly hopes to show others that although struggles may be placed in front of us, they never need to stop us; we can learn more about ourselves and the world around us if we continue moving forward.
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.
Hi my name is Kira Nathan and I am currently a first 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 Madison Elkow and I am a junior at DePaul University in Chicago, Illinois. I grew up in Farmington Hills, Michigan with my family, but am now enjoying my new life and many adventures in Chicago! I am studying psychology, with a concentration in human development, with dreams of one day becoming a certified Child Life Specialist.
I was diagnosed with Ulcerative Colitis thirteen years ago, when I was eight years old. My story is very similar to many others; my parents noticed the quality of my life drastically decrease when their energetic eight-year-old daughter was suddenly trapped by her own body. After many months of testing and failed treatment, my gastroenterologist confirmed the diagnosis of my Ulcerative Colitis. Upon my diagnosis, my doctor immediately put me in touch with CCFA. Over the past thirteen years, my family and I have had the great pleasure of becoming very involved with this amazing organization. Together with my family and friends, I have fundraised and walked in Take Steps walks, attended benefits and information seminars, volunteered at the Michigan chapter office, and most importantly, had the honor to attend and later become a counselor at Camp Oasis.
Although it was not easy at first, I have now come to terms with the fact that living with Ulcerative Colitis is going to be a life long journey, with many ups and downs. I am very thankful for the many friends and supporters CCFA has helped me meet over the past years. I look forward to working with the NCCL and continuing to help raise awareness for CCFA!
My name is Miles Lichtman, and I am from Chalfont, Pennsylvania, a small town less than an hour outside of Philadelphia. Currently, I am a sophomore studying at Stanford University. I was diagnosed with ulcerative colitis just this past March.
The weeks leading up to finals are a busy time for most college students, but as so many of my peers worked tirelessly to prepare for their next round of exams, I unknowingly took the first steps of a lifelong journey with inflammatory bowel disease. I spent thirteen days at Stanford Hospital, and I return there every eight weeks to receive the Remicade infusions that have kept me in stable remission.
These past several months have simultaneously been the most difficult and the most empowering time in my life. My disease has inspired my interest in health policy and the American health care system. However, this experience has not only translated to my studies. It also plays a role in how I live my life each day. In light of my diagnosis, I have a newfound appreciation for health and an undying gratitude to my family and friends, who were there to support me during one of the darkest times of my life.
For me, successfully managing my ulcerative colitis means owning my condition and approaching each day with confidence and optimism. Although I was diagnosed less than a year ago, I am determined to see a world where no one will have to suffer from IBD. I believe that sharing my experience will increase awareness, and I am looking forward to working with the CCFA and serving as a voice for the thousands of young adults who suffer from inflammatory bowel disease.
I am a sophomore 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 Crohn's’, Crohn’s doesn’t have me.
My name is Monica Johnson and I am currently a junior electrical engineering major at The University of Texas at Austin. I am involved in several engineering groups on campus and love to explore Austin in my free time.
I was born in Chicago, IL and moved to Allen,TX when I was seven years old. I was diagnosed with Crohn's disease when I was just 5 years old and was put on a high dose of steroids right away. I was on steroids for about 2 years, and have since tried Remicade, Humira, and many other drugs to help control my disease. My battle with Crohn’s has been a rollercoaster as far as the ups and downs that I’ve had, though I am happy to say I have not had any many surgeries. I am proud to say I am living a healthy and normal college life, well as normal as any IBD patient can have, and am so grateful to be where I am today. Having this disease for so long has greatly impacted the person I am and my strength and outlook on life.
I became involved with CCFA as soon as I moved to Texas by being a camper at Camp Oasis. I have since become a counselor for camp and have participated in many events to help raise awareness and fundraise money to help find a cure for this disease. Many of these events include Team Challenge, Take Steps, Putt for a Purpose, bowl-a-thons and the gala. I have volunteered for my hometown North Texas Chapter for almost 8 years and have recently been involved with the South Texas Chapter while at school. I have been named Honored Hero at one of the annual Take Steps walks in Dallas as well as the Youth Ambassador. This past summer I ran my first Team Challenge race in Napa and plan to do the Vegas race in November. Last semester I was also able to put together a Team Challenge Campus team at my school, where we ran a 5K and raised over $2,000 as a team. This program was created by the council, which I have been a member of for over 2 years now, and it has been so inspiring to be able to work with such amazing people and actually be implementing our own ideas on our campuses to raise CCFA awareness.
I was born and raised in Dallas, Texas and am currently a second-year biology major at the University of Virginia. I am a brother of the Alpha Epsilon Pi fraternity and excited to be a part of the National Council of College Leaders.
After my pediatrician saw that I was very underweight and had not grown much for several years, a few other tests were ran and I was ultimately diagnosed with Crohn’s disease at the age of twelve. Over the next year or so, I went through a barrage of treatments before ultimately settling on Humira, which has thankfully kept me in remission ever since. I have been lucky enough to have a very supportive family, including my father, who is a gastroenterologist, and friends by my side the entire time. 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. In addition, I have been part of a research project on the inflammatory response at UT Southwestern Medical School and hope to become a doctor someday, myself.
Going to college presented new challenges, like how I needed to get my medicine shipped to me and dealing with the stress of living on my own and taking college coursework. Spending time at CCFA events has been an amazing experience—not only am I working to find a cure for my disease, but I’m also meeting people who have gone through much of what I have. I hope my involvement with the NCCL will be a continuation of this experience and facilitate connections for others in similar situations.
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 fix 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. Through giving these speeches I met a girl who told me that I had to go to Camp Oasis.
At my first year at camp I met a counselor who was an IBD researcher at the university of Chicago, who I asked if I could follow her one day in her lab to see if I wanted to work on a cure for the rest of my life. After the first day I knew that this is what I was going to do for the rest of my life.
When I got to college I knew I needed to help make an impact on campus so I started to find a lab to join to do research in which I have been doing now for two years. I also joined the National Council of Collegiate leaders to help be an advocate for college students.
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 and I will control it.