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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 junior at UConn in the NEAG School of Education studying Special Education, and am just finishing up my first year as a member of the . Much of my childhood was spent in Naperville, Illinois, but since the beginning of high school I have called Ridgefield, Connecticut my home with my parents and two younger sisters, Sarah who is 15 and Jane who is 13.
After being involved with everything and anything growing up, my time and priorities are now split between teaching and community service, my love for basketball, and working with 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 ileosesectomy, Sarah was diagnosed, and then Jane was diagnosed. Just like that, four out of the five members of my family had received the same diagnosis of Crohn’s Disease.
When I went to college that 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 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 Youth Leadership Council 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. My sister now goes to Camp Oasis, and I continually talk to her about how cool it is to have friends that “get it.” I think that’s the best part for kids, teenagers, and young adults about CCFA, that it allows us to interact with people who understand what we’re all going through, hear their stories, and work together to find a cure.
I am a junior at the University of Pittsburgh studying neuroscience in hopes of pursuing a career in healthcare focused specifically on inflammatory bowel disease and the search for a cure. On campus I am involved with Student Government as well as Colleges Against Cancer, Relay for Life and my sorority, Alpha Delta Pi. In addition, I am a proud advocate for CCFA and the NCCL. I also perform research at the Arthritis Institute of the University of Pittsburgh Medical Center. It is incredibly interesting as many of the drugs that we study are ones that are used to treat Crohn's Diseaes and Ulcerative Colitis. This has fueled my interest in potentially working on research specifically related to IBD.
I was diagnosed with Crohn's Disease at the age of nine and was immediately put in contact with my local CCFA chapter. Over the past ten years, CCFA has had an incredible impact on my life in ways I could not have anticipated. I have run Team Challenge, been both a camper and counselor at Camp Oasis, walked for Take Steps, and attended numerous events in both Pittsburgh and my home state of New Jersey. As I entered my freshman year of college I was so excited with the opportunity to be a member of the NCCL. The past two years on the council have proved to be an incredible experience. Not only have I been able to meet an incredible group of people who are passionate about finding a cure as well, I have also been a part of many projects and initiatives that align with CCFA's mission.
Working closely with CCFA for the past ten years as well as being an active member on the NCCL has motivated me to always be a part of the fight for a cure. I have met so many people; many now close friends, who have had a great deal of impact on my life. Although I have faced struggles, I have met others who have struggled more, and I am determined to work hard to put an end to Inflammatory Disease in my lifetime so no one else has to know such struggles.
Ashton was diagnosed with Crohn’s disease at age 10. “For me it was and is never about being a patient, it’s about living my life to the fullest and never holding my disease responsible for missing out on one thing or another”, said Ashton. Since then, empowerment has been her key to find her own success and help others to do the same.
As a UCLA junior with a strong GPA, she’s empowering others. On the local level, she has created support groups and a forum for UCLA students to meet monthly and share their experiences with Crohn’s and ulcerative colitis, she is also a member of CCFA’s National Council of College Leaders. In addition, she is making an impact internationally. Ashton was chosen to lead the Jacobs International Teen Leadership Institute (JITLI), a dialogue and cultural awareness program, JITLI brings together Jews and Muslims from the US and Israel for a year-long program that ends with a trip to Israel. “Despite my fears of being in a foreign country and the necessity to embrace such a great sense of responsibility, I refused to let my Crohn’s stand in the way of such a compelling experience,” said Ashton. “Discovering my sense of empowerment has been essential to actively creating the life I choose to live. I have chosen to let Crohn’s Disease be a part of my definition, but I vowed to never let it define me.”
My name is Brandon Gillman and I am currently a sophomore 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 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 ten 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!
My experience with Crohn’s disease has been anything but typical. The disease was discovered not because I showed symptoms, but because in seventh grade when I got my appendix out, doctors happened to discover an inflammation in the same area. After several tests, Crohn's was diagnosed, but the disease remained in a dormant state until November of eleventh grade, when it flared up.
Despite knowing that I had Crohn’s for several years, I found myself completely unprepared for how it would affect my life. During the most difficult year of high school, when most kids were worrying about the SATs, ACTs, choosing and visiting colleges, and finding a date for the Junior Prom, I found myself worrying about feeling well enough to just go to school, and if I did, making it to the bathroom on time. Now that Crohn’s had reared its ugly head, I was forced to recognize that I did, in fact, have a disease, and I was finally honest with myself, as well as with my teachers, peers, and especially my friends. I realized that this honesty was the only way to keep the disease from controlling my life. Eventually, thanks to the support of my family and friends, and personal perseverance, I was able to overcome the challenges I faced while Crohn’s tried to control my life.
Luckily, due to Humira, I have been in remission for a little over a year, 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 am a junior nursing major at Villanova University, and I am from Bethesda, MD. I’m involved in both the Washington D.C. and Philadelphia chapters. The past four years, I have participated in the DC chapter’s Take Steps walk, which is one of my favorite awareness and fundraising events. I also participated in my first Day on the Hill in May, where we lobbied to congressmen and women on behalf of the CCFA. I strongly encourage anyone to join us this coming May, because the experience was extremely eye opening and I learned so much about CCFA, research on IBD, and legislation!
Now for a little about myself, I was diagnosed with Crohn’s disease as a junior in high school. While my case of Crohn’s is very severe, I have been lucky to avoid surgery, and have had great success with my Remicade infusions. The first six months after being diagnosed were the hardest, as it is with many IBD patients. I missed too much school, could hardly walk because of the constant pain, dropped a lot of weight, and was waiting for my doctor to pick a treatment (other than Prednisone) that worked.
I know that a place like Campus Connections would have helped me a lot. The support and advice from other teens fighting IBD is exactly what could have lifted my morale. Since then, I’ve realized how precious good health is, and I’ve decided that IBD won’t rule over me as it once did. I know how strong I’ve become from the fight against Crohn’s, and as youth, I know we all have the ability to help each other fight and become stronger, and make a different in the world of IBD. This is my second year on the National Youth Council and I am excited to work with the amazing group of NCCL members as advocates for the CCFA, to form a community for the youth suffering from IBD, and to spread awareness about Crohn’s and colitis!
My name is Monica Johnson and I am currently a sophomore electrical engineering major at The University of Texas at Austin. I was born in Chicago, IL and moved to Allen,TX when I was seven years old. I have a younger sister who's 15 and a younger brother who's 9.
I was diagnosed with Crohn's disease when I was just 5 years old and have tried many different types of medications and procedures to get me to where I am today. 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 today and my strength and outlook on life. I 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 Take Steps, Putt for a Purpose, bowl-a-thons and the gala. I also used to be a camper at Camp Oasis and am interested in becoming a counselor very soon. I have volunteered for my local North Texas Chapter for almost 7 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 year I plan to start training for the Team Challenge race in Kona, Hawaii which takes place next summer and as a practice race I hope to start a Campus Challenge team on my own campus. I have been a member of the National Council of College Leaders for one year now and it has been so inspiring to be able to work with such amazing people and actually be able to contribute to the CCFA community.