Thursday, August 23, 2012
Reflections from the President- Why I love G-PACT and will always fight for you By: Carissa Haston
G-PACT. Gastroparesis Patient Association for Cures and Treatments. The name seems simple enough, but it really says a lot. Eleven years ago, a handful of people with GP put a lot of thought into the name. It was important to us to have a good name. We didn’t want to just throw a few letters together, but wanted a cool acronym to go along that would say what we were about. It was important to us that the acronym, along with the full name, speak for us.
Although we have changed and expanded beyond just gastroparesis and added chronic intestinal pseudo-obstruction and colonic inertia, it still sums up what we do. Gastroparesis PACT. People with gastroparesis who have come together as a force to fight this in whatever way we can. We are not going down easily. We are a force to be reckoned with. We need a cure. We are tired of being ignored.
G-PACT was officially founded on August 23, 2001 in Lewisberry, PA. Lewisberry is a small town of just a few thousand people located in the suburbs of Harrisburg, PA. It’s not exactly the place for a non-profit to thrive, but it is run out of the home of the President. All volunteers are scattered throughout the country and we communicate via internet and phone.
G-PACT has changed somewhat over the years to accommodate for the growth and growing needs of patients, but the core mission has always remained the same. When founded, we knew a cure was a long ways off. While we wanted to work towards that, we also recognized that patients had needs that needed to be met immediately. They needed ways to cope, learn, and get through each day with this until the cure is found.
We have a multi-focused purpose. We provide a lot of resources to help patients get through the tough times now, educate, and provide hope and support, while advocating and fighting for a cure in the future. We enjoy what we do. We love interacting with patients on a personal level, and we hope that our optimism and love for life in spite of challenges is apparent and helps all of our patients realize that it is possible to live with hope in spite of DTP.
G-PACT is amazed to look back on the past 11 years and realize how far we have come. It has not been easy. We operate under very difficult circumstances. We are all unpaid volunteers who are dealing with the conditions ourselves which often makes getting things done challenging when we are not feeling well. Some of us give anywhere from 20-60 hours a week of our time to keep G-PACT running. We also have to run this on a long distance basis, which can make communication difficult. It has been run from hospital beds, nursing homes, home computers, and often while we are supposed to be on vacation!
Although we are leading in this and the most strongly patient supported organization for digestive tract paralysis in the world, funding is limited so we do what we can, with what we have, where we are. We are often surprised at how much we can do given the unique challenges we face. We have impacted the lives of people in over 30 countries and all 50 states. G-PACT-like organizations have formed in the UK and Australia as a result of our work. The colors used for DTP, lime green and yellow, were our original colors and we are honored that they have become recognized as the international awareness colors for conditions which cause paralysis of the digestive tract.
Because of these unique challenges and the growth, G-PACT is seeking additional resources to help continue our work. If you would like to give back to us in any way through fundraising, personal donations, connecting us with others who can help, and especially offering your time as a volunteer, we would really appreciate whatever you can do. We are growing so fast, which is very encouraging, but in order to continue to grow and make as big of an im-PACT as we have in recent years, we also need additional resources and funding to accommodate for the growth. We believe we reach out to approximately 8-9,000 people on a regular basis, and that at least 25,000 have been impacted by our work in some way in the past 11 years. We work really hard, so we appreciate the support and positive feedback we receive from you. It helps us to know that our work is important and we need to continue to fight, even when it is so challenging at times.
A video has been posted on the Facebook fan page which details the beginnings of G-PACT and a little about my history leading up to the founding of G-PACT. Dr. Ken Koch of Wake Forest University, a leader in fighting GP who is working on stem cell research as a potential cure, is on the video and describes the importance of G-PACT’s work in our early days.
On a more personal note: My medical situation has become more complicated since (the video was created in 2002, barely a year after our founding). I developed severe CIP and ended up having a five organ transplant in 2006 (small bowel, stomach, pancreas, liver, and duodenum). Although it saved my life, it has created additional complications. In spite of that, I still have hope that a cure is out there. Even if a cure is not in my own future given the complexities of the transplant and additional health issues, I have hope for everyone else. That is why I have never given up on G-PACT. I know how important a cure is. I am not in this for myself. I am grateful to be alive and thankful that the transplant option was available for me, but I want to know that someday no one will ever have to face that same extreme treatment option and can be cured by something that will have no complications or long-term effects.
There is a lot more hope now than even five years ago. Much of this is the result of the work we have done. This encourages us to continue our work. We know we cannot stop. This is too important! We will continue to fight for you!
We enjoy the videos patients make and have been encouraged by references to us in news articles which have popped up all over the world. It helps us to know that people value our work enough to refer others to us to learn more. We encourage people to continue to increase awareness wherever you are and be sure to let us know what you are doing wherever you are. We love it when people take initiative to fight for themselves and do whatever they can to help themselves. When you fight for a cure for you, you are also fighting for millions of others. That is one reason our work is so important and why we keep doing it in spite of hitting so many brick walls along the way! We have broken through some of them and that is what drives us! As one patient said about our work, which also references our GI tracts “Any movement is improvement!” Too many people need to know that someone is fighting for them and have hope that life won’t always be like this. One day everyone will eat again with no more pain and nausea!
Please continue to follow our page at www.facebook.com/GPACT and do what you can to help us increase awareness. Thank you for taking part in DTP Awareness Month and we hope you will continue to participate in the events we are providing this week to make increasing awareness fun. We try to make things as easy as possible. Please participate in our media letter writing campaign especially and call your congressperson to help them understand our need for more research funding! And of course, Happy 11th Birthday G-PACT!