Jon is the creator of CROHNIC, a startup that shares messages of invisible conditions through design. Living with IBD since 2010 and a Rare Disease since 2017, Jon found few answers within standard medicine for relief or treatment; seeing over 40 different specialists during that time, most of whom discounted those reported symptoms as drug-seeking behavior. This constant need to advocate for the health and living conditions within his own body became personal. It wasn’t only doctors or nurses with these unsolicited opinions—it was family and friends too. A deep rooted passion for branding and design along with seeing this need in a seemingly underserved community, which included himself, was the inspiration to launch this project. CROHNIC was created to open the dialogue around [in]visible illnesses for patients, advocates, and everyone. Based in Buffalo, NY, CROHNIC is prioritizing giving back to the community it serves through social programs and non-profit work. CROHNIC is every day.

Ayarpi Reganyan was diagnosed with Ulcerative Colitis in 2007. She went from one doctor to the next in search of answers. After years of research and trying many diet and exercise routines, Ayarpi began to understand that her body simply wanted to be heard. It was tired of the endless hours at work and the unhealthy foods she was subjecting it to. Her body had enough and it was very clear. Ayarpi has taken what she has learned from the last 13 years and decided to put it to use by developing a line of protein bars that have minimal ingredients with nothing artificial called BodyBar Protein, LLC. BodyBar Protein is a Paleo Friendly Protein Bar line with minimal ingredients. The goal at BodyBar Protein is to bring protein bars back to basics. Ayarpi openly shares her journey with Inflammatory Bowel Disease (IBD) with the hopes of helping others turn their struggles into something positive.

Sneha founded the Health Advocacy Summit and Crohn’s and Colitis Young Adults Network, with major funding from the Helmsley Charitable Trust and Cystic Fibrosis Foundation, to create more support systems for young adults and adolescents with chronic and rare illnesses across the U.S. and internationally. She is proud of the organizations’ funding source transparency and independence from receiving money from the pharmaceutical industry. She was chosen as one of the most influential teens globally in 2018 by the We Are Family Foundation.

Sneha completed a research fellowship in health policy at Harvard T.H. Chan School of Public Health, where she is continuing research as an undergraduate in health care related to young adults. She also interned at the Crohn’s and Colitis Foundation Headquarters and Pfizer Global Headquarters in health economics and outcomes research for Inflammation and Immunology. Sneha spoke on Capitol Hill, featured nationally on C-SPAN, is a past contributor for U.S. News and World Report, and has put in considerable time and effort in D.C. advocating for better access to health care for people with chronic illnesses. She also created and chairs the first disability caucus in Indiana, and has served on the Democratic National Committee Disability Policy Subcommittee and Women’s March Disability Caucus. Sneha was awarded two academic fellowships with the Association of Health Care Journalists. She was previously a national policy fellow and now serves as the youngest director on the board for RespectAbility, a nonprofit fighting stigma and advancing opportunities for people with disabilities. Sneha has spoken at Stanford Medicine X, the Harvard Youth and Public Health Summit, the National Academies of Science, Engineering, and Medicine and other major avenues.

In her free time, she enjoys climbing, hiking, and reading all things related to health economics. Most of all, she is incredibly grateful for all the people she gets to work with and those that have overcome barriers in their lives to continue thriving with a chronic illness. She has proudly lived in Indiana most of her life, is an advocate for women supporting women, is passionate about advancing health care in rural communities, and is an ardent supporter of more transparency in the patient advocacy space.

Cody Maher is a NYC born and raised actor, writer and patient advocate for IBD. For years she hid her disease and the struggles she faced out of shame and embarrassment. Now, she openly shares all aspects of herself in hopes of raising awareness, helping to destigmatize Inflammatory Bowel Disease and, most importantly, to help others struggling with chronic illness to feel less alone.

Sofia is 25 years old and has been living with type 1 diabetes for 10 years. In 2013, she was diagnosed with Ulcerative Colitis as well, now struggling with both chronic conditions on a daily basis. She has been running her own business since 2014, including lecturing, blogging (www.diabetesia.se), Instagram (@diabetesia.se), consultant jobs for med tech companies, event planning and more. She wants to make a difference, break down prejudices, raise awareness and make sure no one feels alone in their condition.

Dane is the Founder of CrohnsColitisLifestyle. His passion for natural medicine began after a personal life threatening battle with Crohns Disease & Ulcerative Colitis. The disease left him unable to walk, eat any food, be without extreme drug use or constant care. Through his personalized program, S.H.I.E.L.D, he was able to discontinue the use of any conventional drugs, recover 60lbs of lost weight, restore all aspects of his life and now help others do the same.

A magna cum laude graduate of Vanderbilt University, Rebecca has lived in Manhattan for nearly 20 years, where she has worked as an Integrated Marketing Executive specializing in full service custom branded partnerships. After nearly a decade at Conde Nast Publishing group, she now focuses on conversation based digital tech innovations for e-commerce, fashion, retail and lifestyle brands such as eBay. In the 24 years since Rebecca was first diagnosed with Ulcerative colitis, she has undergone 6 major surgeries including the removal of her entire colon and creation of a j-pouch in 2016-2017. Rebecca is a staunch IBD awareness advocate and top national fundraiser, sitting 3 boards for the Crohn’s and Colitis Foundation’s: Young Professionals, Spin 4 and the Patient Education Advisory. In her free time Rebecca loves to exercise, travel, spend time with family and volunteer.

Krystal is the co-founder of a cannabis health & wellness company, Kanabé Goods Co. After a long battle of being sick and overlooked, she was diagnosed with severe fistulizing Crohn’s disease in 2010. Her disease was presenting in atypical symptoms making it very hard to pinpoint, and after years of sickness and weight loss, her intestine was so damaged it resulted in many trips to the ER. With that, high doses of opioids and prednisone were the norm while waiting for a resection surgery. After the procedure, Krystal had been looking for balance in her life with the main goal being remission. She discovered medical cannabis was a great alternative to prescription pain medicine, and aided with the anxiety of dealing with a chronic illness. In 2016, she began making cannabis infused balms and oils to rub directly on pain points, or ingest as an alternative to smoking, and was able to use her personal marijuana license to develop these products that otherwise would not be found in regulated markets. These non-intoxicating methods of using cannabis spurred the idea that it can be used for health and wellness in everyday life; the same as taking a vitamin or using a muscle rub. She wanted to enable others suffering from IBD and other chronic illnesses the same relief she found with cannabis, thus Kanabé Goods Co. was born. Kanabé is bringing cannabis topicals, tinctures, and capsules to market with Canadian cannabis legalization in 2018 focusing on health and wellness rather than intoxication. Krystal’s hope is to empower others to be an advocate for their own health and wellness. She aims to educate on the benefits that cannabis products can offer as an add-on to traditional therapies for IBD.

Ijmal Haider is the founder of Razi Blog and co-host of the web series ‘Help Us YYC’. Both are focused around advocating the importance of mental and physical well being while dealing with Chronic and Invisible Illnesses. Ijmal was diagnosed with Ulcerative Colitis in 2015. He graduated with a degree in Urban Sociology, in 2011, his love and focus has always been on the importance of community and the importance of social interactions to create unity. This has been a practice he has followed through his career and life by traveling around the world and empirically studying community and culture, and now something he is practicing to raise awareness with UC and other invisible illnesses.

How do you #turnyourlyfeon?

Working on myself is important, balancing my diet, staying active, keeping up on mental fitness helps keeping that momentum to tackle life with Chronic Illness. Never stop fighting. In life I have had to come face to face with adversity on numerous occasions, I have had to fight the odds, and I have had to prove my worth and value. For me, turning my lyfe on is no different; nobody in this world will fight harder for you than you, so never stop fighting for yourself. Part of succeeding in that fight is surrounding yourself with a community to help you #turnyourlyfeon when you feel you can’t fight anymore, shedding your life of the unnecessary negativity, and having people who will encourage you to the finish line rather than weigh you down. Some days you may lack the positivity to #turnyourlyfeon but if you have a strong enough community around you they will pick you up when you’re down and heal you when you’re weak, and forgive you when you’re broken.

Louise lives with three chronic autoimmune Diseases: IBD Crohns, Type 1.5 diabetes and a mild psoriasis. She is actively fighting for awareness about Diabetes and IBD. She has been in the media many times and is continuously booked for speaking engagements about her life journey, and how to maintain a positive attitude. Louise is also a Patient Entrepreneur who has teamed up with Lyfebulb to create ‘Bling Your Pen,’ a DIY case for your insulin pen.

Despite being hospitalized 20% of her life due to many years of serious Chrons and 25 surgeries, Louise choses to welcome every single day with a smile on her face, and is one of the most positive people in Denmark.