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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.
Ashton's innate desire to seek out those stories that often remain untold brought her to discover and cultivate her passion to promote the human rights of vulnerable populations, whether that be refugees, Holocaust Survivors, or people with disabilities. After personally dealing with a chronic disease for much of her life, Ashton was driven to generate awareness for those individuals who often feel silenced by their conditions. This very personal experience strengthened by her extensive volunteer work in every tier of the Crohn’s and Colitis Foundation of America, encouraged Ashton to serve on the organization’s National Council of College Leaders, culminating in the founding of her own support group and piloting of national awareness initiatives.
As a fourth year International Development Studies major and Disability Studies minor, Ashton translated her passion for the disability community into an immersive learning experience by spending the semester in Washington DC as an intern for the National Council on Independent Living. While working in policy, Ashton spearheaded the organization’s briefings to Congress and advocated for the ratification of the UN Convention on the Rights of Persons with Disabilities.
Ashton has extended her passion for advocating for vulnerable populations into her work as the director of Bearing Witness, an intergenerational program bringing together UCLA students and Holocaust Survivors over bimonthly lunch sessions to promote greater genocide awareness. As a storyteller and advocate, Ashton remains committed through her leadership role in the Writing Success Program as a writing counselor for students originating from underrepresented communities on campus.
My name is Brandon Gillman and I am currently a junior 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 junior 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 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 am a mentor for 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 2012 was my 7th summer at Camp Oasis. I was a Leader-in-Training along with many of my friends and am now hoping to continue this amazing experience 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’m Julie, a senior nursing major at Villanova University, from Bethesda, MD. I’ve been involved with the CCFA for five years, since my diagnosis with Crohn’s as a junior in high school. I’m involved in both the Washington D.C. and Philadelphia chapters and have been on the National Council of Collegiate Leaders for three years. I’ve been involved with the DC chapter’s Take Steps walk, which is one of my favorite awareness and fundraising events. This year, I am so excited to be their Honored Hero!
I've also participated in Day on the Hill, 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 when I was sixteen. The ups and downs have been tough at times, but I’ve learned more about myself than I ever thought possible and have gained a new appreciation for life through it all. I also have been lucky to meet some of the greatest people I know through the CCFA. I know that a place like Campus Connection would have helped me a lot when I was first diagnosed, so I hope this is a site where you can feel that “you are not alone.” 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 difference in the world of IBD.
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.