I have been fighting Gastroparesis since 1994. At that time, resources were limited. There was minimal internet to access information, and what was available was sparse. I had to accept what my doctors were telling me as truth without having the option to speak to others about their personal journeys and share stories. As the internet grew, I became even more determined to seek out any information I could find, recognizing that I did not fit into what my doctors considered a typical case of Gastroparesis.
Immediately after graduation in 2000, I decided to use my time to create my own personal website to share my story and increase awareness of Gastroparesis. At that time so little information existed so my site was high in rankings on search engines. I received so many messages from all over the US asking for information. Everyone shared a unique story and were seeking others who could relate. I was so overwhelmed with the responses that I decided to start a Yahoo group so everyone could connect with each other and share experiences.
I did not expect the group to get more than 50-75 people total. I was amazed as the numbers climbed into the hundreds within months, and eventually into the thousands. The growth of the Internet was changing the world and the loneliness of fighting GP.
As the core group grew very close, we realized there was a need for a non-profit dedicated to fighting Gastroparesis. I gathered a group together, we met for a few months to discuss our ideas, and they chose me to be the President. I agreed, on the condition that they understand that I was planning to go to grad school in a couple of years and would no longer be able to able to do it. I filed the paperwork with the PA Department of State on August 23, 2001 and we became an official 501(c)(3) non-profit.
Clearly my life took a different path. My health continued to deteriorate. Eventually, I went through a 5 organ transplant in 2006 which included my small bowel, stomach, pancreas, liver, and duodenum. Although I had almost no chance of surviving the initial operation, I came through it extremely well. During the three years I was out for transplant, a few dedicated volunteers kept G-PACT alive.
In 2007, I had no desire to return to G-PACT. I was ready to move on to new adventures. However, too many people wanted to get it up and running and encouraged me to relaunch our programs and begin expanding. I agreed to do it, again, with the understanding that I was going to go to graduate school in a couple of years. Instead, I developed even more health conditions and was never able to begin my graduate program. Over the years, I have been in and out of G-PACT, at times unable to be involved as I have been in various hospitals and nursing homes, and struggling with conditions which left me bedbound. Other team members have always jumped in and helped G-PACT continue to move forward in my absence. G-PACT has been lifesaving for me too, giving me a purpose and reason to keep fighting in a way in which could accommodate my unpredictable extended absences.
As of October 1st, 2019 G-PACT will have a new President. I am stepping down in order to take some needed time to pursue some passions I have had since college. Although I am not planning to attend graduate school anymore, I have a passion for writing and illustrating children’s books, volunteering in my local community more, and having the ability for more down time to focus on improving my health.
As I look back 18 years, I don’t regret that my own plans were disrupted. I have seen how much G-PACT has grown and how desperately we have been needed. I love G-PACT. I love how patients have been so involved in who we have become by suggesting needed programs. It has been exciting to see the growth. I have enjoyed connecting with patients on a personal level. I love the heart, passion, and personality of the organization. I have enjoyed making it an organization with a serious mission, yet some fun and creativity with a personal touch. It has been amazing to see how much we have impacted the world of DTP from the awareness color choices, the founding of awareness month, the policy changes we have influenced, the awareness and education of so many who would have never been correctly diagnosed, to the support and many resources we have been able to provide. We may not get paid, but the stories we have heard from all over the world from patients who have been impacted by our work and to recognize that we have laid a solid foundation for others to carry and advance forward is pay enough. You can’t put a price tag on that!
We are right here with you. We are fighting every single day too. I encourage you to support the new President, Samantha Smith, and the team as they lead G-PACT forward. Take the solid foundation we have worked so hard to develop, come together as one community, and help eradicate DTP for future generations.
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” Margaret Mead
Thank you for giving me the opportunity to serve you for 18 years and believing in the mission of G-PACT and our passion to fight for all of those suffering from any form of Digestive Tract Paralysis.