Improving the quality of life for people with inflammatory bowel disease (IBD) takes commitment and focus to understanding the issues affecting patients and caregivers. Real change means engaging with all stakeholders, including physicians, industry, and government, as well as patients and caregivers. A future that includes more effective treatments and compassionate care for those touched by IBD will only happen when those who have the best interests of patients at heart take their seat at the table. There are many activists in the IBD community that are doing this hard work and you can strengthen their achievements by amplifying their voices.
Below, find a group of IBD activists that you should be following on social media and, more importantly, should be supporting when they are in those board rooms and on Capital Hill speaking up for patients.
Brooke Abbott, The Crazy Creole Mommy
Brooke has attended several day on the hill events as a lobbyist, is a member of several committees and advocacy groups, has spoken at a briefing on Capital Hill, and is a tireless activist advocating for change. Brooke follows public policy closely and can advise patients and caregivers on how the bills making their way through Congress may affect everyday life. Keep up with Brooke through her blog and social media channels and you’ll gain a better understanding of how what goes on in government affects people with IBD.
Hear one of the many episodes of the About IBD Podcast we’ve recorded together here: Episode 10 – Advocacy With Brooke Abbott
- LinkedIn: https://www.linkedin.com/in/brookeabbott/
- Instagram: https://www.instagram.com/crazycreolemama/
- Twitter: https://twitter.com/crzycreolemommy
- Facebook: https://www.facebook.com/CrazyCreoleMama
- Blog: https://crazycreolemommy.com
Meenakshi Bewtra, MD, MPH
Dr Bewtra is a force in the arena of public health. She’s a gastroenterologist and Assistant Professor of Epidemiology in Biostatistics and Epidemiology and Assistant Professor of Medicine at the Hospital of the University of Pennsylvania. She’s active with IBD patient advocacy groups and takes time from her busy life as a physician and mom to lobby on capital hill and affect change for patients. Send her your photos of getting vaccinated on Twitter using #RideTheSHOTWAVE and she will donate to UNICEF. Dr Bewtra is most active on Twitter, though I have a campaign to get her over to Instagram, because I selfishly want more of her (and her amazing kids).
Hear the About IBD Podcast we recorded together here: Episode 48 – Getting Kids Involved in Advocacy
- Twitter: https://twitter.com/DrsMeena
- LinkedIn: https://www.linkedin.com/in/meenakshi-bewtra-08b4a54/
- Penn Medicine: https://www.pennmedicine.org/providers/profile/meenakshi-bewtra
Neilanjan Nandi, MD, FACP
Dr Nandi is on a mission to help his IBD patients be more physically active and to communicate well with their care team. He is a gastroenterologist specializing in IBD and is the Director of the Center for Inflammatory Bowel Diseases at Drexel Medicine. Whether it’s lobbying on the hill or raising funds for patient advocacy groups, Dr Nandi brings his energy and knowledge to bear in order to improve quality of life for people living with IBD. He is a tireless supporter of IBD patients everywhere and can be frequently found leading the charge for the causes he believes in. His Instagram, Twitter, and Facebook are always on fire.
- LinkedIn: https://www.linkedin.com/in/neilanjan-nandi-md-facp-43b970115/
- Instagram: https://www.instagram.com/fitwitmd/
- Twitter: https://twitter.com/FITWITMD
- Facebook: https://www.facebook.com/FITWITMD
- Blog: https://www.fitwitmd.com/
- Drexel Medicine: https://www.drexelmedicine.org/find-a-doctor/n/neilanjan-nandi
Aline Charabaty, MD
Dr Charabaty is Director of the Inflammatory Bowel Disease Center at Sibley Memorial Hospital and Assistant Professor of Medicine at Johns Hopkins Medicine. She’s a gastroenterologist, a whirlwind of activity, and takes a special interest in women’s health. She has lobbied on Capital Hill with patient advocacy groups and spoken at a briefing discussing the challenges faced by minority patients who live with IBD. She created Monday Night IBD (#MondayNightIBD) where she poses a clinical question every Monday at 5PM Eastern and gets her gastroenterologist and colorectal surgeon colleagues to weigh in on solutions. She then actively solicits patients to also give their perspective. You can join in the conversation by following her on Twitter. And yes, she put purple in her hair for World IBD 2019!
- LinkedIn: https://www.linkedin.com/in/aline-charabaty-6282215b/
- Instagram: https://www.instagram.com/dralinecharabaty/
- Twitter: https://twitter.com/DCharabaty
- Facebook: https://www.facebook.com/DrAlineCharabaty/
- Monday Night IBD: https://twitter.com/MondayNightIBD
- Johns Hopkins Medicine: https://www.hopkinsmedicine.org/profiles/results/directory/profile/10004637/aline-charabaty
Tina Aswani Omprakash, Own Your Crohn’s
Tina is living with Crohn’s disease and a permanent ostomy. Her advocacy work is focused on bringing to light how cultural issues interact with the treatment and management of IBD. She runs patient support groups, lobbies on the hill, and has spoken at numerous events including medical conferences and IBD educational events. Tina is a loyal and fierce supporter of others in the IBD community and brings a positive energy to the work she does. She is active on all social media platforms but you will especially want to sign up at her blog to receive emails when she publishes a new article.
Hear the About IBD Podcast we recorded together here: Episode 40 – What Are People Going to Think?