Advocacy Work
I have taken part in lobbying efforts on Capitol Hill, moderated social media patient experience discussions, and written extensively about my experiences with Crohn’s Disease.
I’m available for public speaking events, panel discussions, conferences and other experiences where an IBD patient’s voice is a critical part of the discussion.
I’m delighted to be part of the Girls with Guts blogging and resource pages teams. Here are several of my blog posts:
- December 2023: Reclaiming Our Holiday Joys
- May 2023: Parenting and IBD Goals: Autonomy
- April 2023: Empowering Myself with IBD Symptom Tracking
- January 2023: The Waiting Game: Switching IBD Medications
- December 2022: The Kids are Going to Be Okay, and So Am I
I am currently training to become a Crohn’s and Colitis Foundation Support Group Leader. I hope to restart the Northern Virginia CCF Support Group virtually in mid-2024, and look to host in-person meetings shortly after. Stay tuned!
@MondayNightIBD
In October of 2023, I was invited to moderate a Patient Experience Twitter/X discussion for @MondayNightIBD. Dr. Aline Charabaty runs the CME program on social media that connects medical providers with patients throughout the year to discuss concerns relevant in the field of IBD research. The discussion I moderated explored the important topic of side effects of steroids in IBD patients.
Digestive Disease National Coalition
In March 2024, I took part in the DDNC two day Public Policy Forum in Washington, D.C. This included remarks and speeches from industry and government leaders as well as advocacy training. I accompanied Health and Medicine Counsel legislative advocates on a day-long tour of Capitol Hill, meeting with many members of the House and Senate to share my story as a Crohn’s patient, and to advocate for their support of bills and research funding that could save my life.