The Crohn’s & Colitis Foundation Is More Than Just A Charity, It Is A Community
The Crohn’s & Colitis Foundation (CCF) has always been close to my heart and is a cause that I feel very passionate towards. Crohn’s and Colitis runs in my family. My mom, uncle, grandma, grandpa, cousins, and I have all suffered from IBD. I was diagnosed with Ulcerative Colitis at the young age of 9, and for the last 20 years my family has been actively donating to the Crohn’s & Colitis Foundation. I have known for a while that I also want to help contribute to making a difference and have recently started to take action and get involved.
Like everyone else, when the pandemic started, my lifestyle dramatically changed. Unfortunately due to my chronic illness, I had to take even more precautions then other people in my life. I decided to make lemonade out of lemons and take advantage of my extra time, take a leap of faith, and start my own business creating a planner that I had dreamt about making during one of my worst flare ups a couple years ago. Without hesitation, I went to work. I spent 6 months straight working hard at designing the ultimate planner to help people with chronic illnesses, or struggle with mental health, track how they are feeling every day as well as keep their medical information organized in one spot.
When I first started working on creating the Healthy Life Planner, I immediately knew that I wanted to donate a percentage of what I made to the Crohn’s & Colitis Foundation. I designed this planner with the intention of helping people. I wanted it to not only be a tool that helps people keep track of their health, but also make a difference in other people’s lives with each purchase.
Little did I know, that a whole new world was about to open up to me by discovering all that the Crohn’s & Colitis Foundation have to offer.
In the process of donating to the foundation, I began to gain interest in not only donating, but also getting involved with the Crohn’s & Colitis Foundation. I have discovered that there is a community of people like me who have IBD issues that I can talk to, relate to, and participate with in activities. I signed up for the Spin For Crohn’s & Colitis event that the foundation was putting on. It was hosted by YouTube star Rebecca Zamolo and I had so much fun participating.
Also, in early December I joined a virtual meet up with other young professionals who live in the LA area and are coping with the same medical challenges. I was able to hear some incredible stories shared by other people about how they have brought awareness to IBD through their careers.
Cory Greenberg and Derek Mari are two of the incredible people that I met.
Cory is a professional cyclist who has Ulcerative Colitis. In the meet up he shared his story about what it is like being an athlete living with IBD. Cory is a huge advocate for the Crohn’s & Colitis Foundation and has made it part of his mission to bring awareness to his condition. One way he did this was by creating an event where people from all over the world could come together and ride their bikes virtually through an app called Zwift. Through this, Cory was able to build a community that supports IBD and creates awareness while sharing a common interest of riding bikes. For this virtual event, he partnered with Zwift, the Crohn’s & Colitis Foundation, and Zoca who made a special set of cycling jersey and shorts that say Crohn’s & Colitis Foundation on it. These collaborative uniforms were available for purchase to wear during the virtual event. When I first learned about this, I thought it was a fabulous idea because it is incredibly rare seeing IBD having any correlation with athletes. I find this really inspiring because it helps make a statement that just because you have a health problem such as Colitis or Crohn’s, doesn’t mean you can’t be an athlete. It proves that everyone can persevere.
Derek is a writer and director located in Los Angeles. He is known for his sketch comedy, improv, and screenplays. He has been a finalist in the Black List’s Michael Collyer Memorial Fellowship, and a semifinalist in the Sundance Institute’s Development Track Program 2020. During the Crohn’s & Colitis youth professionals meet up in the beginning of the month, Derek shared one of his short films called Crohnie with the group. It was about a young male adult living with Crohn’s and facing multiple stressful things in his life. I think it is important for IBD to be shown in media and film especially since it is not common. In the movies I often see story lines about people with cancer or mental health issues. I can honestly say I can’t think of one film or show with a story line or conversation about an invisible illness such as colitis or Crohn’s. I appreciate the fact that Derek is helping represent us and give people with our condition a voice.
Cory and Derek were both gracious enough to discuss more about their involvement with the Crohn’s & Colitis Foundation and answer the following questions regarding the importance of the CCF:
Brea: When and how did you get involved with the Crohn’s & Colitis Foundation?
Cory: I got involved with the Crohn's and Colitis Foundation in 2015, where I spoke at events as well as online social media engagements. In 2019/2020 I ramped up my support and have been working hand in hand with the foundation to use my professional sports career to bring my awareness to IBD.
Derek: The Crohn's and Colitis Foundation was an incredible resource for me when I was first diagnosed. I learned a lot about my illness just by reading their website and other patients' testimonials. When I embarked on producing the feature-length version of Crohnie, I knew I wanted their support as soon as possible. They have been an invaluable resource for us during the development of this film, and I look forward to building those relationships.
Brea: What do you enjoy most about the events that the Crohn's & Colitis Foundation put on?
Cory: I enjoy the events as a way to reach out to others in the IBD community, as well as patient caregivers. Our recent event on Zwift was so much fun, and I’d have to say my favorite thing about it was seeing the reaction of new IBD patients realize there is so many people in our community for them to find a common bond with. The messages of folks saying they thought they were alone and now have others like themselves to get to know, it gives them hope.
Derek: With the events that the Crohn's and Colitis Foundation put on, there is such freedom of expression for all of us knowing that our experiences are shared and understood. I enjoy attending these meetings/galas/etc. where patients bring levity to the daily struggles of living with one of these diseases. There's a great sense of community.
Brea: How or why would you encourage others to get involved?
Cory: I encourage others to get involved with IBD advocacy/awareness because like myself many years ago, I had no clue what IBD was or what to do when diagnosed. My hope is that the more outward our efforts to make IBD a common discussion, the better our chances for new or existing patients to feel more comfortable coming forward and talking about their conditions, ultimately seeking the help and resources they need to find the right treatment path.
Derek: I would definitely encourage anyone with Crohn's, Colitis, or any invisible illness to attend a CCFA event! The Young Professionals group is a fun place for people ages 18-39 to hang out and talk openly about their illnesses, symptoms, worries, achievements, and progress. It's always comforting to know you're not alone in this battle.
Brea: Thank you Corey and Derek for sharing your inspiring insights.
I completely agree with Corey and Derek that getting involved with the Crohn’s and Colitis Foundation gives one a feeling of community. A community filled with connection, new friends and activities where everyone lifts each other up, and does not judge one another for their frequent bathroom trips or accidents. I am so happy to have found a community of people who can relate to one another about how a medication, like Prednisone, makes us feel, or the annoyance of having to plan our lives around monthly infusions, or having injections every other week.
I have learned that it is important to become an advocate and, like Cory and Derek, to also speak up about my illness. IBD is considered an invisible illness and there are so many people who don’t understand much about it. I am excited to help promote the benefits of the Crohn’s & Colitis Foundation, and help educate others about this illness, which affects millions of people.
One of the ways I am advocating for my illness is by registering for a fundraiser called Take Steps. “Take Steps is more than just a walk. It is a community that brings together patients, caregivers, and friends in a celebration that will leave you feeling empowered and inspired.” - https://www.crohnscolitisfoundation.org/get-involved/fundraising-events/take-steps . This fundraiser is one of the many events put on by the CCF. This year’s event will take place either in person or virtually (TBD) on June 12th. The goal is to come together and support one another whether you are personally coping with IBD or a loved one of someone with IBD. I have started a team called Healthy Life and would be honored to have you join my team to help raise money for the Crohn’s & Colitis Foundation. Go to http://online.crohnscolitisfoundation.org/goto/healthylife to join!
I am looking forward to participating in other Crohn’s & Colitis Foundation activities in person, once the pandemic is over.
I encourage all of you to get involved with me. You can learn more about the Crohn’s & Colitis Foundation at https://www.crohnscolitisfoundation.org
Thank you for reading. If you have any questions, please email me at healthylifeplanner@gmail.com