Honored Heroes are ambassadors for Take Steps and the Crohn’s & Colitis Foundation as a whole. As patients and healthcare professionals, they are the voice and face, the heart and soul of our walks. Honored Heroes are nominated annually and help raise awareness of IBD through their promotions and fundraising for Take Steps in their local community. They are dedicated to publicly sharing their story and providing a strong example of progress we are making in the fight against IBD. Their commitment to increasing awareness and revenue by engaging their community, family and friends is truly inspiring.
Ella is 13 years old and currently in 8th grade. When she was nine years old, she started feeling sick. She was nauseous all the time, had trouble eating without pain and was so tired she could barely get through the school day. By the time summer arrived, she could barely walk down the street without feeling ill. Her family didn’t know how serious it was until she was diagnosed with Crohn's disease right after her 10th birthday. By then, she had stopped growing, was severely underweight and in constant abdominal pain. The recovery process was very difficult for her, especially in the beginning. The first rounds of medication were not successful and she couldn’t tolerate them. Luckily, after a few long months, in August of 2017, she began receiving IV infusions of Remicade at Yale New Haven Children’s Hospital. It was not an immediate relief but by the end of the first year of treatment, Ella was able to resume her typical level of activity. Thankfully, she is now in remission and feeling well. She receives IV infusions every six weeks, along with other oral other medications. Ella has deeply connected with youth her age through the amazing opportunity for the past 3 summers, including virtual camp this year, of attending Camp Oasis. It has truly changed the way Ella thinks about the disease and helped her to find others kids her age who are going through similar challenges. The Shamash Family has participated in the Fair/West Take Steps program since 2018. Supporting the Foundation and building awareness are important to them because they would like to find a cure for their daughter and all the others that suffer. Ella is very grateful to be the honored hero this year!
My name is Jeff Pressman and I am (reluctantly) delighted to be one of this year’s Honored Heroes. I have suffered with Crohn’s Disease for over 13 years. At first, when I started showing gastroenterological symptoms, it was difficult for doctors to determine which ailment I suffered from. I was initially diagnosed with Ulcerative Colitis - something I knew nothing about. Then, about 2 years later, after a painful abscess in my abdomen and a 5-day stay in the hospital, my doctor changed my diagnosis to Crohn’s Disease.
Throughout my years with Crohn’s, I have been on every class of medication available, with varying levels of success. I have been on countless pills, infusions, injections, and clinical trials. Several of them have worked for me at times, only to stop working eventually; at which point my doctor and I discuss what the next drug treatment will be. And on several occasions, we even discussed the possibility of colon surgery, but fortunately, I have not had to face that – yet.
Although living with Crohn’s Disease is a challenge for me, I know that there are many others who suffer from Inflammatory Bowel Diseases who have more extreme situations which may include having experienced multiple hospitalizations and/or surgeries. That’s the reason that I said I ‘reluctantly’ accepted the honored hero title; because I figured that someone who has suffered more should get this honor. But all of us who have these diseases suffer in our own way and many times, it is invisible to those outside of our immediate families.
For me, Crohn’s impacts my life in that it is very difficult for me to start my day most mornings. There are too many times when I am stuck in the bathroom or don’t feel well enough to do anything. As a result, I realized that a typical 9-5 office job would not be realistic for me. Therefore, I started working for myself at home, so I wouldn’t have to work on anyone else’s timetable. But even then, I still have to reschedule the occasional meeting at the last second, or even worse, take calls from the bathroom. And when traveling was a thing, I was never able to fly or take any other type of transportation typically until the afternoon. This shift in my and my family’s schedule could be a little bit of a challenge at times, for example, as it was the morning of my daughter’s Bat Mitzvah 2 years ago. I luckily was told where the secret temple bathroom was located in case I needed to make a quick getaway. And my wife practiced both her part and my part of our parent speech in the event that I would be in the bathroom at the moment in the service when it needed to be delivered.
While my family may know the ins and outs of my bathroom habits and my personal experience with Crohn’s, others don’t know how severely having an IBD impacts my daily life. That’s why the CCFA is so important for the 1.6 million Americans living with an IBD, as well as their families that suffer indirectly, because it raises awareness for these “silent” diseases and reduces the stigma associated with them while providing support for those who are impacted.
For these reasons, my family and I got involved with the Take Steps walk 10 years ago. I am proud to say that through our team’s efforts, we have raised over $60,000 for the CCFA. Thank you, Linda and Lisa, and everyone else at the Foundation for all that you do to help patients and others in their fundraising which brings education, support, and research in treatments for Inflammatory Bowel Diseases.
I would also like to thank my wonderful gastroenterologist, Dr. Myron Brand, for working so diligently and personally on my disease over the past 13 years. He has made this process more bearable by partnering with me when discussing my treatment options and even taking the time to speak with me while he’s been on vacation and on weekends when I was not feeling well or awaiting important test results.
Thank you to my family for supporting and putting up with me. And thank you to everyone who supports Take Steps. May we continue to raise much needed funds to help improve the quality of life for those suffering from Crohn’s and colitis.
Dr. Al Bawardy is a gastroenterologist and IBD specialist at Yale University/Yale New Haven Health. His clinical practice is dedicated to taking care of patients with IBD. Dr. Al Bawardy, currently serves on the Connecticut Chapter Medical Advisor Committee.
Thank you Dr. Al Bawardy for your hard work and dedication. We are honored to have you as part of our Chapter!
I’m fundraising on the behalf of the Crohn’s & Colitis Foundation because I believe no one should have to deal with the fear, uncertainty, and pain caused by Crohn’s disease or ulcerative colitis, also known as inflammatory bowel diseases (IBD).
I believe no parent should have to explain a chronic disease to their child.
I believe no sibling should have to watch their brother or sister suffer.
I believe that by investing in the best doctors and scientists we will one day cure these diseases.
I believe that every dollar I raise for research will have a ripple effect and could be THE dollar that changes everything for a family affected by IBD.
I believe that every person who joins the fight against IBD can have a lasting impact in the lives of every person diagnosed, today and in the future.
When you join my team or donate, you are supporting Take Steps and the Crohn’s & Colitis Foundation. But more importantly, you are supporting an incredible community who have banded together to make sure that every day counts for patients.