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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 Ben and I am a senior at Kettering University. I was diagnosed with a "mild" case of Ulcerative Colitis in December of 2009 which was during my senior year of High School. It has definitely been a life-changing diagnosis. I really look forward to meet others around my age that deal with IBD as well. Feel free to contact me through email.
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 was diagnosed with Crohn's in 2009, when I was 20 years old. Since then, there have been lots of ups and downs. I've had to take about a year off total of school due to issues of Crohn's. It's been a struggle and still is, I'm looking for support and people who understand how hard it is to complete school while dealing with Crohn's and its symptoms and complications. I'm looking forward to also providing support and compassion for others in similar positions.
I'm 23, gonna be starting school at SLCC as an undergrad going into Social Work, got diagnosed 5/29/09, married 11/11/11 .
Diagnosed in July of 1999, it’s clear to say that Crohn’s disease has been a large part of my everyday life. Living with Crohn’s has never been easy; it affects both you and the people around you. But it isn’t the fact that living with IBD affects you, but it’s how you let it. Living with Crohn’s has influenced my drive to succeed, and in many ways, the career path that I have chosen for myself.
Living with Crohn’s has always been challenging for me. I’ve never responded well to any traditional medications or treatments to IBD, and have only over the past two years noticed any marked improvement with my condition. Despite all the challenges that I faced during grade school, I still managed, with occasional difficulty, to succeed in my classes. Walking down the halls of school with a condition that people either didn’t know about, or if they did, didn’t necessarily understand, was difficult at times. I missed class frequently due to hospitalization or routine visits for treatment or check-up. Despite everything, I always had support from my family, close friends from Camp Oasis, and medical professionals that were there for me during my best and my worst. This is what helped me get through to where I am today, and although never easy, it was worth it.
Since I was little, I was always interested in science and living things, and each of their unique interactions that created the community where they lived. I believe that community is one of the most important values that the CCFA has. It is the community of remarkable medical professionals and members of over forty chapters nationwide of the organization that stands out over all others that has fueled my desire to pursue my career with the CCFA after graduation.
The NCCL is an esteemed group of individuals, and although we all have different stories and come from different backgrounds across the U.S., we all share the same passion for the organization that already does so much for us, and I’m proud to be able to say I am a part of the council. Through our goals, we hope to continue to foster everything the CCFA stands for, and further contribute to the grow as a national community of individuals working to one day find a cure for IBD.
If there is one thing I would like to suggest to anyone dealing with IBD or any other medical condition, it is to never let it hold you back from your dreams and aspirations. Your condition doesn’t dictate what you can and can’t do; it should only fuel your desire to be stronger and more resolute to who you want be, and where you want to end up. These are the types of individuals that make up the community that I call my second family and home.
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!
Senior in college living with ulcerative colitis.
My name is Katherine Raderstorf, I'm from Columbus Ohio, and I'm currently at senior at John Carroll University, majoring in Human Resource Management. I was diagnosed with Crohn's Disease when I was 13. I never thought that my struggles with IBD would lead to such positive and remarkable opportunities.
Crohn’s Disease has shaped my life in such an amazing way. I’m no longer ashamed or embarrassed about my disease because it led me to this council, helped me to discover my passion and allows me to create life-long friendships with other patients who understand exactly why this organization is so important to me. Being a part of the NCCL has truly been a life changing experience for me. I am inspired everyday to be a voice and an advocate for those with IBD because so often the voices of those suffering from these diseases are not heard. Without a doubt I have found that having a strong network of support is the most important thing as a patient with Crohn’s Disease. I am incredibly blessed with the constant support of my friends and family members. Having these people in my life, as well as being involved with CCFA, is what has gotten me through the hardest times with my disease. Participating in events such as Take Steps and Camp Oasis, I am constantly inspired by the perseverance and strength of the IBD community. I continue to learn so much from others who suffer from these diseases, those who care for them, and those who support them. Each time I meet someone new who suffers from IBD, I am impassioned to support and encourage them. Improving the lives of others with IBD has truly become my passion and I know that with everyone working together, someday we will have a cure.
Hi! My name is Kathryn and I am a senior at Texas Christian University in Fort Worth, Texas. In school, I am studying Sociology and Strategic Communications, hoping to join Teach For America after I graduate.
As everyone on NCCL can attest, I love my Horned Frogs and bleed purple! My hometown is Memphis, where my family still lives. I was diagnosed with Crohn’s in 2001 when I was in 5th grade. Like most other IBD patients, I have had my fair share of steroids and immunosuppressants which have helped me reach remission today. Increasing awareness about IBD and providing information to patients is really important to me because, when I was diagnosed, I had never heard of the disease and knew no one to talk to!
Being part of the NCCL has empowered me to fight this disease and I am so thankful for the incredible people I have met through the council. I hope you will take action today to help do your part to spread awareness for Crohn's disease and Ulcerative Colitis!
Actively pursuing adventure since 1991.
I'm a sophomore at Penn State, majoring in Health Policy and Administration with an interest in Pre-Law! Diagnosed with Crohn's Disease at the age of 10, currently in a state of remission...Remicade treatments every 8 weeks! From NJ, 5 minutes from the beach! Camp Oasis (PA) camper for 7 years and counselor....love it!
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.
I'm a senior this year, studying Astrophysics and East Asian Studies at Valpo. I keep myself busy with my classes, tutoring, and doing research. I love astrophysics and am applying to graduate school this year to go get my Ph.D. I’d like to study solar physics and hopefully someday end up being a professor at a large university teaching and doing research. When I’m not in class, or doing research, I’m doing yoga, watching movies, cooking something gluten free, or shopping. On top of all that I have Crohn’s. I was diagnosed in high school, and have only a few very short remissions since then. My school work makes me happy, although it can be very challenging. I have had a hard time balancing my lofty education goals and my disease. Some days I can’t make it to class, or when I do get to class I can’t focus because I don’t feel well. I’ve had to miss weeks of class at a time for doctor’s appointments out of state. Along with my Crohn’s I have a few other autoimmune conditions which require even more time and attention. I can’t even begin to describe how discouraging it can be sometimes. I’ve never given up though, because although I often define myself by what I do, including battling my disease, I never let my disease define me. My family and friends have been a great support, and great disability support services at school to make sure my professors are on the same page as me.
My "story" isn't about how I was really sick for awhile and struggled and got better. It’s about how I was really sick and how I work towards full health every day, my story is what I do in spite of my circumstances. My favorite way to advocate for Crohn’s is awareness. Often when I tell people what I have they have never heard of it before, and it’s hard to sum up in just a few words! I also like making connections with others who have Crohn’s, because we go through a lot of the same things. Just being able to talk to someone who goes through the same thing you do can make all the difference. I look forward to some day being both fully healthy, and having my Ph.D. in Astrophysics and nothing can stop me from doing both.
I was born in 90 so whatever age that would make me now! I've had UC since 2002. I have been in and out of the hospital for a long time. When my flare is bad, it's really bad; when I'm doing good, life is normal for me. This has definitely made me grow pretty quickly. I had to let go of some friends in my life and find new ones. I definitely have learned that communication with people has made things a little easier. It makes me feel less of an outcast. So I love to dance, go to church, create litlte crafts, workout, watch my favorite shows, and a bunch of other stuff. I could go on and on lol!