What can CCFA's National Youth Leadership Council do for YOU?
Thu, June 02, 2011 3:41 PM
As chair of CCFA's National Youth Leadership Council (NYLC), I'd like to introduce the NYLC to you. We are a group of 20 college students committed to advocacy, education, fundraising, and support for youth and young adult IBD patients. This year, we have completed a few major projects that we are very excited about. We created a manual for starting support groups on college campuses and have begun creating these Crohn's and Colitis Student Forums on our own campuses to provide support for IBD patients as they enter college. We also rolled out a fundraising program, Phones for Crohn's. Through this program we are collecting phones and used ink cartridges to recycle and bring in funds for CCFA. Just this past week, NYLC also led education programs at CCFA's Day on the Hill for youth and parents on empowerment and advocacy for IBD patients. We received great feedback from those in attendance and look forward to making the program available on a national level.
Now that we're finished a few of our larger projects, we're looking to take on some new ones. So we want to hear from YOU, the patients. What would you like to see NYLC working on? Would education programs help? More information on your rights in education & employment? What particular needs would you like addressed?
NYLC is here to serve you!
duboi764Joined Mar 29, 2011
Wed, July 06, 2011 12:55 PM
Reply posted for duboi764.
You're probably familiar with Uncover Ostomy, but I think that the way that was done was fantastic. No, I don't normally advocate girls posting half naked pics of themselves online ostomy or not, but I do believe that a lot of awareness was gained through that campaign, and I think that Jessica Gossman provides much information on CD and the use of ostomies. Maybe a project similar to that to promote IBD awareness would be a good idea.
Joined Dec 8, 2010
Mon, June 27, 2011 3:15 PM
Reply posted for duboi764.
As a UC patient in college, my biggest problem was fear. I was afraid to return back to the active and fun lifestyle that I had before UC and before the surgery. I live in a small town where many people don't know anything about UC or Chron's (neither did I prior) so of course there isn't any support groups (which is how I ended up here). So I didn't have anyone saying that its okay to be myself. As a UC/CD patient we have to make changes and sacrifices but we shouldn't have to completely end our lives. I'm sure that I'm not the only teen going through this. We need help in transitioning back into social lives with these diseases. We need ways to help each other and teach each other what we know.
tooyoungforthisJoined Jun 27, 2011
Mon, June 13, 2011 8:18 AM
Reply posted for duboi764.
Discrimination seems to be a bit of an issue. One blogger in this forum dropped out of a semester of college due to a flare. He was told, to be readmitted, he needs to PROVE that his IBD would not be a hindrance on his classes next time around. As you know, nobody can prove or guarantee that.
Can you help in this situation?
Joined Jun 4, 2011
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