Pennsylvania
Gastroparesis Advocate
November 2020
Hi, my name is Debbie Popp and I am a Gastroparesis patient and advocate. I was diagnosed with Gastroparesis almost 5 years ago. Seeing the lack of treatment options and information available to patients, I knew that I wanted to help in any way that I could. I became involved with the Gastroparesis community on Facebook and quickly realized that there were opportunities to spread awareness and seek some unity. I met Melissa Adams VanHouten and we decided that we would merge our efforts and together we built a website dedicated to Gastroparesis advocacy to enhance the groups we would run on Facebook.
Gastroparesis: Fighting for Change has a national advocacy page and group, with groups in every state for local advocacy and support. Our organization now provides both brochures and business cards to our community free of charge. We can do this with the money we raise through various fundraisers.
We have been collecting personal stories that we share on our website, www.curegp.org, as well as forward to each individual’s state representatives asking for support of H.R. 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019. To date we have sent 496 letters to 233 members of Congress and 994 letters to 88 members of the Senate.
In 2019 we were able to organize a rally in Washington DC and had more than 100 participants attend in person, with many more watching live video presentations from home. We were able to raise the money by fundraising to support the cost of this event. Many of those who attended in person also attended IFFGD’s Hill Day as well, where we visited both congressional representatives and senators sharing our stories and asking for their support.
I participate in calls with representatives and have had in person meetings with my local congressman, Brian Fitzpatrick. I spend my days helping to administer our groups, talking with patients who are either newly diagnosed or who are struggling with treatments, and sharing what I have tried and had some successes with. I am a volunteer for AGMD and serve on the patient advisory council for IFFGD. I have done most of my work from a hospital bed, which I was pretty much confined to for several years, 90% of the time. Though I am able to function much better these days as a result of G-POEM and a permanent Ileostomy, I still suffer from other chronic illnesses and do still spend much of my time in bed. It doesn’t stop me though, I just spent the last month doing an awareness video for World Ostomy Day with several ostomates sharing their stories of experience and hope at https://curegp.org/videos/interviews/ostomies/.
Advocacy is a passion for me. It helps others know they are not alone, and it helps me too! I am not able to sit at a desk, stand for long or stay in the same position for long, so I can’t hold a job. Advocacy makes me feel like I am contributing in some way. I do everything I can from my bed or from my phone when I am able to function. Being an advocate has saved me from the darkness. It gives me hope that someday we may have better treatment options, and hopefully, it’s bringing change to other people’s lives.
